Final Literature Review | Health Informatics | General Practitioner

LITERATURE REVIEW ON WOMEN’S ACCESS TO HEALTH INFORMATION

LITERATURE REVIEW ON WOMEN’S ACCESS TO HEALTH INFORMATION...................1 TRENDS AND PREFERENCES IN ACCESSING SOURCES OF HEALTH INFORMATION . 5 As discussed, there are numerous sources of health material differing greatly in quality, type and currency. However, improvements in women’s own and their family’s health will not happen unless certain barriers to using health information sources are overcome. The first of these is that of health literacy; it is important to ensure that women know how to source appropriate, quality information, comprehend it, and apply it to their lives. The second is to overcome barriers created by the information itself, such as it being incomplete or unspecific and not quality assured. Finally, there are barriers to using these sources of health information related to women’s time constraints and women’s specific circumstances........................................................18 Incarcerated women and specific health needs...................................................................................24 Improved decision making and communication ................................................................................40

IMPROVING NATIONAL HEALTH LITERACY..............................................48 THE ROLE OF WOMEN’S HEALTH CENTRES............................................50 CONCLUDING COMMENTS..........................................................................52 EXECUTIVE SUMMARY.................................................................................52 CONCLUSION.................................................................................................53

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Introduction and Background for Literature review The Women’s Centre for Health Matters (WHCM) is a community-based organisation that aims to provide women with access to reliable and broad ranging health-related information, to be an advocate for the improvement of health-related services, and to empower women to have optimal health and wellbeing. This literature review is intended to supplement a survey of women’s access to health information, their needs and trends, undertaken by WHCM in 2009, and to provide a basis for further research. Rationale There are a number of reasons it is important to understand how women access health information from a variety of sources, the current trends, and women’s preferences. Firstly, women clearly want guidance and more information on health matters, but they often encounter barriers in obtaining current, relevant and credible health information. Personally relevant health information not only enables women to make informed decisions about medical procedures but also optimises their general health and wellbeing. Secondly, it is vital for women to be able to access quality health information as they are the primary seekers of health information as well as the main decision makers with regard to their own and their family’s health. Access to quality health information enables women to make use of health and wellbeing services when necessary and, for minor matters, to use that information as a substitute for consultations with health professionals. Thirdly, access to health information increases the likelihood that women and their families will undertake positive lifestyle changes to improve their health and reduce their risks and subsequent burden of preventable illness and stress. Fourthly, understanding the sources of health information used, and preferred by women, is invaluable in the continued improvement of services providing such information. These services need to ensure the information is accurate, can be disseminated and, easily applied by women. The way in which women access health information, and their confidence in doing so, changes over their lifetime and in response to technology and different styles of health information and services available. Health information providers must also be aware of issues especially concerning women, such as reproductive health, breast cancer and domestic violence. Such issues require sensitive attention as available information can be distressing, factorial, opinionated and often overwhelming. There is also a need to provide additional services to help groups of women with specific needs, for example those who come from Culturally And Linguistically Diverse (CALD) backgrounds, women who are illiterate, and those with disabilities to ensure they have effective access to the health information they need.

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Objectives The primary aim of this literature review is to accompany the Women’s Centre for Health Matters (2009) Survey on Women’s Access to Health Information in the ACT. Other objectives of the literature review include: • To provide evidence based literature to help analyse and discuss the WCHM ACT Women’s Access to Health Information (2009) Survey findings. Find similarities and differences and compare study findings to be able to comment on national and international trends. To build upon previous research by Women’s Health Victoria (2003) which revealed a deficiency in access to health information for Australian women, and to determine whether that deficiency continues to exists for women in the ACT. To respond to women who have voiced dissatisfaction with their access to health information and validate the need to improve women’s access to health information. Adequate access to quality health information (i.e. good health literacy) is seen by the WCHM as an essential part of empowering women and promoting ACT women’s health and wellbeing. To examine the growing body of academic research on how adults, particularly women, access and use health information, giving special attention to sources used and boundaries faced by specific groups of women. To analyse the impact of technology on the means and trends of accessing health information, such as what sort of health information women are seeking i.e. is it to diagnose acute medical conditions, find specialists, for general health information, or to network with others who share their health conditions. To define key terms for analysis and future research in this field of study.

Boundaries of the review Several boundaries governed the scope of this literature review. Firstly, all articles are from peer reviewed journals to ensure high standards of research. Secondly, almost all literature was published since 2002. This was to avoid duplicating analysis of literature already discussed in papers from the Key Centre for Women’s Health in Society (covering 1986-1998) and the Women’s Health Victoria (covering 1998-2003).1, 2 However, some articles prior to 2003 have been mentioned if they have remained relevant to issues and trends discussed. Another reason for predominantly using recent articles is to take into account the rapid increase in Internet usage in recent years. Studies
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Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 3. 2 Astbury, J, and D. White. (1998) “Addressing women’s health information needs: the adequacy of current and emerging health information systems. A literature review”. Melbourne: Key Centre for Women’s Health in Society. 3

chosen were not confined to only those with women as their participants/focus of study, however, to be included in the review studies had to mention women’s access to health information or a trend or barrier specific to women. The review focused on local and national research but international studies have also been assessed for analysis. Methodology for Literature Review This literature review was undertaken by searching for relevant peer reviewed articles in the academic databases Medline/Pubmed,3 CINAL4 and OVID.5 All searches were restricted to 2000 onward and written in English. A few additional searchers were done by following the references of important articles if those articles met the defining criteria (of English language, post 2000 and peer reviewed). Major search terms used were ‘women’ with ‘access to health information’, ‘health seeking information’ and ‘health literacy’. Thousands of articles were found. After a cursory review, 59* articles were selected for closer study on the basis of their relevance to the review’s objectives. Reports from the Australian Bureau of Statistics were also used to find prevalence rates and statistics for specific questions such as Internet usage.

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http://www.ncbi.nlm.nih.gov/pubmed/ http://www.ebscohost.com/cinahl/ 5 http://www.ovid.com/site/index.jsp 4

DETAILED REVIEW OF FINDINGS TRENDS AND PREFERENCES IN ACCESSING SOURCES OF HEALTH INFORMATION Australian women access health information using a variety of sources and for a multitude of health and wellbeing reasons during their lifespan.6,7 Women access health information both through actively seeking out the information to meet specific needs and through the passive absorption of health information available. Active access to health information includes looking up resource materials (e.g. Internet websites or books) or making consultations with health care professionals. Passive forms of health information occur through exposure to the media, as well as everyday discussions and interactions.8 Research indicates that while some individuals actively seek out health care and information, others will live with pain, stress and ill health for a long time without seeking adequate health information or medical services.9 Research shows, not seeking out specific information to meet one’s needs, only passively absorbing health information, or being a passive patient (i.e. less involved or interested in one’s health decisions) results in less positive health and lifestyle choices that can drastically affect women’s (current and future) health and wellbeing.10,11 Recent years have seen a huge socio-political shift towards individuals being, or desiring to be, more active and informed about their health and lifestyle choices. Smith et al. confirms that increasingly individuals feel pressured to be better informed about, and take more responsibility for, their health.12 This global trend to be more informed and active participants in one’s health and

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Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne,5-7, 33-6. 7 Wyn, R. & Solis, B. (2001). “Women’s health issues across the lifespan. Women’s Health Issues”,11(3),148-159. 8 Murphy, M. & Murphy, B. (2003) “Access to women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 16. 9 Mortimer, M. Ahlberg, G. & MUSIC-Norrtalje Study Group (2003). ”To seek or not to seek? Care-seeking behaviour among people with lower back pain”. Scandinavian Journal of Public Health, 31,194-203. 10 Brown, R., Butow, P., Henman, M., Dunn, D., Boyle, F &Tattersall, M. (2002). “Responding to the active and passive patient: flexibility is the key”. Health expectations, 5, 236-245. 11 Murphy, M (2003) “Access to women’s health information: Research Summary”, Women’s Health Victoria, Melbourne, 7. 12 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social science & Medicine, 69, 1805-1812. 5

lifestyle choices is especially true for women.13,14 For women to be autonomous, responsible and make positive informed health decisions, it is essential that they have easy access to quality health information. The term “health literacy” is defined as being able to obtain, sort and comprehend health information to meet one’s needs. Thus the optimal health and wellbeing of women relies on access to good quality, trustworthy, appropriate and easily accessible health information.15 The changing nature of the general public being more responsible and informed on health matters is changing the General Practitioner (GP) / patient relationship with differing roles, expectations, responsibilities and demands for both parties.16 General Practitioners A major finding of the Women’s Health Victoria Survey of Women’s Access to Health Information (2003) found that General Practitioners (GPs) are considered the primary source, as well as the preferred source, of health information for women. Of the women surveyed 95.8% had previously sort health information from their GPs.17 Women of all age groups reported GPs as their preferred channel of health information, though the strength of this trend correlated with increasing age.18 As well as GPs being a frequented and preferred channel, research indicates that women consider GPs to be the most trusted source of health information.19 General Practitioners consider the provision and education of health information to their patients as an important,
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Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) “eHealth trends in Europe 2005-2007:a population-based survey”, Journal of Medical Internet Research, 10(4), e42. 14 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population, 2000-2005”. Scandinavian Journal of Public Health, 35(5), 533-539. 15 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1805-1812 16 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1805-1812. 17 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne 12. 18 Murphy, M & Murphy, B. (2003) “Access to women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne,15. 19 Pennbridge J, Moya R, Rodrigues L.(1999). “Questionnaire survey of California consumers’ use and rating sources of health care information including the Internet”. Western Journal of Medicine.171(5-6), 302-305. 6

if not essential, part of their professional role.20, 21 The trend of women’s preference for the GP to provide individuals with relevant health information is international with significant evidence from studies such as Cowan & Hoskins from the United Kingdom. However, despite the trend for GPs providing the majority of health information, the studies also found that most women do not feel the information provided is enough and still actively have to seek health information from additional sources. 22 It is unsurprising then that despite the preference for GPs to provide trustworthy information, many of the studies analysed suggest that women are not fully satisfied with GPs’ information provision and want more and better quality information for a variety of topics, especially on sexual health.23 Warner & Procaccino’s research reported two reasons why women are not satisfied with GP information provision. Firstly, women felt rushed during their GP consultation, leading to them feeling unable to ask additional questions. Secondly, women felt the information provided was not clear or thorough enough to satisfy their health literacy needs and to develop their understanding.24 Additional research confirms this trend. Ziegler et al. found that over 76% of adults specifically wanted their GP to provide more information concerning adverse effects of medications.25 Wyn & Solis’s specific research on ‘women’s health issues across the lifespan’ found that health information about general lifestyle choices and healthy behaviors was rarely discussed with women during their GP visits. Such a finding was particularly disheartening considering the women from the study suffered from chronic preventable illness but were actively engaging in detrimental or risky behaviors (such as smoking, overeating and lack of exercise) making them
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Waters, E., Haby, M., Wake, M. & Salmon, L. (2000). “Public health and preventive healthcare in children: current practices of Victorian GPs and barriers to participation”. Medical Journal of Australia, 173(2), 68-71.(only got abstract) 21 Murphy, M., Murphy B. & Kanost, D. (2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 14. 22 Cowan, C. & Hoskins, R. (2007). “Information preferences of women receiving chemotherapy for breast cancer”, European Journal of Cancer Care, 16(6), 543-550. 23 Murphy, M & Murphy, B. (2003) “Access to women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 24. 24 Warner, D. & Procaccino, J.D. (2004). “Toward Wellness: Women Seeking Health Information”, Journal of the American Society for Information Science and Technology, 55(8), 709-730. 25 Ziegler D., Mosier, M., Buenaver, M. & Okuyemi, K. (2001). “How much information about adverse effects of medication do patients want from physicians?”, Archive of Internal Medicine, 161, 706-713. 7

more susceptible to degrading health.26 Despite the high demand and preference for GPs providing women with adequate health information, there are significant barriers impacting on this process. Women’s Health Victoria’s A Literature Review of Health Professionals as Information Providers found several barriers discouraging health care providers from providing adequate health information to their patients. These included insufficient time with patients by having truncated consultations and the lack of remuneration for providing preventative health care/information.27 This is reiterated by Waters et al. whose survey of 804 Australian GPs reveals that GPs felt the four key barriers to providing adequate health information were: 1) time constraints, 2) lack of remuneration for doing so, 3) the inappropriateness of providing preventative care when patients are facing acute illness, and 4) lack of community resources.28 Such barriers are systemic. On an individual GP level, Girgis & Sanson-Fisher reported from a survey of Australian interns that although 64% felt competent in technical skills, only 35% of interns felt competent in patient interactions, which includes the provision of quality health information such as optimal behaviour changes and prognosis.29 Thus, for many women the preferred source of health information, their GP, is insufficient to meet their health care needs and they must access health information from other sources. Australian women have reported they see the barriers to GPs being sufficient sources of health information as lack of time with them, the depth and breadth of information provided, and a lack of knowledge on specific information such as on sexual health issues. 30, 31 In addition, the Women’s Health Victoria Survey found practitioner concerns over the changing GP/patient relationship, (with women being more informed (or misinformed) and autonomous), was also noted as a barrier by which practitioners might restrict or inhibit women’s knowledge or ability to be given more information on a topic.32
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Wyn, R. & Solis, B. (2001). “Women’s health issues across the lifespan”. Women’s Health Issues, 11(3),148-159. 27 Murphy, M., Murphy B. & Kanost, D. (2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6-7. 28 Waters E., Haby, M., Wake, M. & Salmon, L. (2000). “Public health and preventive healthcare in children: current practices of Victorian GPs and barriers to participation”. Medical Journal of Australia, 173(2), 68-71. (only got abstract) 29 Girgis A, & Sanson-Fisher R. (1998). Breaking bad news 1: Current best advice for clinicians, Behavioural Medicine, 24(2) (CANT SEEM TO FIND- in Murphy tho) 30 Murphy, M & Murphy, B. (2003). “Access to women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 24. 31 Murphy, M., Murphy B. & Kanost, D. (2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 26-27. 32 Murphy, M., Murphy, B. & Kanost, D.(2003) “Access to Women’s Health 8

The Women’s Health Victoria Survey lead the way for Australian studies on health information finding that many Australian women using their GP as their primary source of health information report they would use GP’s less if they felt they could find quality, reliable health information elsewhere33. This raises the possibility that the burden on GPs could be reduced if women felt more comfortable accessing, and had more faith in, information from sources other than their GP.34 The Internet Consistent research indicates that Internet usage is dramatically increasing across Australia and the globe.35 It has infiltrated many work and living spaces and impacted society and communication in a similar way the telephone did in the late nineteenth, early twentieth century.36 The Internet is also increasingly being used as a source of health information, with young women consistently being the most active in this regard.37, 38 Many studies suggest that individuals are using the Internet to find health information both passively and actively and to answer specific health queries.39, 40 Indeed Kummervold’s et al. significant study (N=14 956) from seven European countries found that 46.8% of their sample perceive the Internet as an “important” source of health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6, 27. 33 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 24. 34 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 24. 35 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) “eHealth trends in Europe 2005-2007: a population-based survey”, Journal of Medical Internet Resources, 10(4), e42. 36 Pandey, S., Hart, J., Tiwary, S. (2003). “Women’s Health and the internet: understanding emerging trends and implications”. Social Science & Medicine. 56(1), 179-191. 37 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008). “eHealth trends in Europe 2005-2007: a population-based survey”, Journal of Medical Internet Resources, 10(4), e42. 38 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population, 2000-2005”. Scandinavian Journal of Public Health, 35(5), p533-539 39 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) eHealth trends in Europe 2005-2007:a population-based survey, Journal of Medical Internet Resources, 10(4), e42. 40 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population”, 2000-2005. Scandinavian Journal of Public Health, 35(5), p533-539 9

information, a significant increase from previous years, while the importance of other sources of health information stayed level or decreased.41 Consistent academic evidence suggests that although the Internet trend is increasing across all generations, young women remain the most active users of the Internet to find health information.42, 43, 44 The Australian Women’s Health Victoria Survey found that despite the recognised often-poor quality of information found on the Internet, it was the second most preferred source of health information.45 At that time the Australian Bureau of Statistics (ABS) found only 37% of Australian households had access to the Internet.46 Current ABS statistics of Internet access at home have shown massive increases in Internet connections over the past decade, with 72% Australian households having Internet access in 2008.47 Of those 28% of Australians without the Internet at home, 47% had no interest or use for the Internet and another 25% had accessed the Internet though other sites such as work, tertiary institutions or family and friends’ houses.48 For Australian women, Internet usage is associated with being middle age or younger, having a partner and/or (dependent) children, having completed tertiary education, having Internet access and having a good income.49 Pertinent to this literature review and accompanying WCHM survey is the fact that the ACT has the highest
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Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) “eHealth trends in Europe 2005-2007:a population-based survey”, Journal of Medical Internet Resources, 10(4), e42. 42 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) “eHealth trends in Europe 2005-2007:a population-based survey”, Journal of Medical Internet Resources, 10(4), e42. 43 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population”, 2000-2005. Scandinavian Journal of Public Health, 35(5), p533-539. 44 Atkinson, N. Saperstein, S., & Pleis, J. (2009) “Using the internet for healthrelated activities: findings from a national probability sample”. Journal of medical Internet Research, 11(1), e4. 45 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 15, 25. 46 Australian Bureau of Statistics (2000). “Use of the Internet by Householders. Australian Bureau of Statistics, (Catalogue No. 8147.0), Canberra. Found at: http://www.abs.gov.au/ausstats/abs@.nsf/mf/8147.0/ 47 Australian Bureau of Statistics (2008-9). “Household use of information technology, (Catalogue No 8146.0), Australia 2008-9”, Canberra. Found at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/8146.0 48 Australian Bureau of Statistics (2008). “Australian Social Trends: Internet access at home (Catalogue No 4102.0), Australia 2008-9”, Canberra. Found at:http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Chapter10002 008 49 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 14-15. 10

proportion of households in Australia with a broadband Internet connection (74%).50 This means that a huge number of Australian, and particularly ACT, women have convenient access to the Internet as a potential source of health information. Alkinson et al. believed that the Internet was the most widely used health information channel with a conservative 2003 estimate of 12.5 million health information searches a day and this number is rising rapidly.51 The type of health information which women access on the internet tends to correlate with women’s educational and economic status, with numerous studies finding that better educated women are more likely to seek factual information on the internet to supplement other sources,52 while less educated women use the internet more to access online support groups.53 Although young women use the Internet readily there is an increasing acceptance of older generations of women using it for information and to communicate and connect with others.54 This is confirmed by Wilson et al.’s 2008 study finding that older Australians are increasingly accepting and using the Internet as a source of health information. However, although this acceptance is rising there remain disparities in the ease of access to health information via the Internet for older Australians (and globally) between those who are more socially connected and of higher socio-economic brackets, and those less socially connected, less educated and well off. 55, 56 An extensive Swedish study of 24 800 adults indicates that women are using the Internet significantly more than men to find additional health information after seeing health care providers, and its use increases with decreasing
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Australian Bureau of Statistics (2008-9). “Household use of information technology (Catalogue No 8146.0), Australia 2008-9”, Canberra. Found at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/8146.0 51 Atkinson, N. Saperstein, S., & Pleis, J. (2009). “Using the internet for healthrelated activies: findings from a national probability sample”. Journal of medical Internet Research, 11(1), e4. 52 Pandey, S., Hart, J., Tiwary, S.(2003). Women’s Health and the internet: understanding emerging trends and implications. Social Science & Medicine. 56(1), 179-191. 53 Atkinson, N. Saperstein, S., & Pleis, J. (2009) “Using the internet for healthrelated activies: findings from a national probability sample”. Journal of medical Internet Research, 11(1), e4. 54 Kummervold, P., Chronaki, C., Lausen, B., Prokosche, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wanberg, S. (2008). “eHealth trends in Europe 2005-2007: a population-based survey”. Journal of Medical Internet Resources,10(4),42. 55 Wilson, C., Flight, I., Heart, E., Turnbull, D., Cole, S. & Young, G. (2008). “Internet delivery of health information to South Australians older than 50”. Australian and New Zealand Journal of Public Health, 32(2), 174-176. 56 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population, 2000-2005”. Scandinavian Journal of Public Health, 35(5), p533-539. 11

health (no doubt trying to fill greater medical need).57 A recent study by Dey et al. of women attending a breast screening service in NSW found that 62% of their clients had used the Internet specifically to find health information. The surprising statistic though was that 70% of the women expressed that they would use the Internet if they were diagnosed with breast cancer, a potentially life threatening health condition.58 If women are using the Internet to find information about a serious health conditions, it must be acknowledged that this source has the potential to both help and harm. This use of the Internet for serious or chronic health conditions is particularly pertinent given Kontos et al.’s reported “decreasing digital divide” allowing many individuals of low socio-economic and educational level to access the internet for health information, without experience or knowledge of how to do so effectively. Such individuals tend to have risk factors contributing to poorer health and reportedly often lack the technical skills and experience of how to access reputable websites or how to check if the information is current and credible. 59, 60 Individuals being led astray with poor quality information could already be occurring, as suggested by a paper from The Journal of the American Society for Information Science and Technology finding that predominantly women access health information only through common search engines and were unaware that many websites’ primary aim was to push a particular political, religious, or economic agenda in selling merchandise or a service. Indeed none of the women surveyed actively searched for who was behind the site or what evidence backed the claims made.61 Evidence indicates patients’ interactions with their health care providers and their involvement in healthy lifestyle choices and health care decisions are strongly influenced by the Internet.62 As well as influencing decisions and communication, Sillence, et al. reported that women often use the internet to find personalised stories from those with a similar health issues to validate their feelings, connect with others and improve trust in physicians as clinical
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Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population, 2000-2005”. Scandinavian Journal of Public Health, 35(5), p533-539. 58 Dey, A., Reid, B., Godding, R., & Campbell, A., (2008). “Perceptions and behaviour of access of the internet: a study of women attending a breast screening service in Sydney, Australia”, International Journal of Medical Informatics, 77, 24-32. 59 Kontos, E., Bennett, G., & Viswanath, K. (2007). “Barriers and facilitators to home computer and internet use among urban novice computer users of low socioeconomic position”, Journal of Medical Internet Resources, 9(4), 31. 60 Warner, D. & Procaccino, J.D. (2007). “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 61 Warner, D. & Procaccino, J. (2007). “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 62 Sillence, E., Briggs, P., Harris, P., & Fishwick, L. (2007). “How do patients evaluate and make use of online health information?”, Social Science & Medicine, 64 (9), 1853-1862. 12

information can be discussed in a more personalised manner.63 There is a trend for women with higher educational levels to seek out more factual health information, while online support groups and social networking are particularly sought by women with poorer health and less income and educational level.64 Indeed research from the United States indicates highlights that women are increasingly seeking online support networks to help fulfil their “need to be heard and respected when they looked for information about their health or on behalf of others,” which they may not receive from other health information sources.65 This could partially be put down to conclusive evidence that many studies show that woman are unable to find adequate time to discuss health information or their concerns during their rushed visits to their GPs.66, 67 Telephone Help Lines In Australia, telephone help lines are a minor source of health information compared to other sources, with the Women’s Health Victoria (2003) Survey finding only 7% of women surveyed use one as a source of health information.68 Telephone lines such as QUITline however still receive over 130 000 calls a year, for counselling to help improve health and reduce tobacco consumption and provide health and wellbeing information.69 A New Zealand study found that their pilot telephone health information help line was most commonly used after work hours by women and children. This service that connected individuals to a nurse and could be accessed from the privacy of one’s home was found to especially help culturally and linguistically diverse (CALD) women (primarily of Maori decent). The help line was used for general health information and minor health conditions but was also used for directing individuals to other health care professionals when the nurse could not
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Sillence, E., Briggs, P., Harris, P., & Fishwick, L. (2007). “How do patients evaluate and make use of online health information?”, Social Science & Medicine, 64 (9), 1853-1862. 64 Atkinson, N. Saperstein, S., & Pleis, J. (2009). “Using the internet for healthrelated activies: findings from a national probability sample”. Journal of medical Internet Research, 11(1), e4. 65 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information.” Qualitative Health Research, 17(5), 647. 66 Wathen, C. & Harris, R. (2007). “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651. 67 Waters E, Haby M, Wake M, Salmon L. (2000). “Public health and preventive healthcare in children: current practices of Victorian GPs and barriers to participation.” Medical Journal of Australia, 173(2), 68-71.(only got abstract) 68 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 26. 69 Miller, C., Wakefield, M., & Roberts, L. (2003). “Uptake and effectiveness of the Australian telephone Quiteline service in the context of a mass media campaign”, British Medical Journal: Tobacco Control, 12, 53-58. 13

provide adequate information.70 Printed Materials & mass media texts Printed texts and mass media health information include materials such as newspapers, books, pamphlets and magazines targeted at women. Jones reports that: “The media are an important source of health information for many women and probably influence their perceptions of susceptibility and appropriate health-protective behaviours.”71 This is particularly true for conditions affecting women such as breast cancer, which, good health information and early detection, have the potential to reduce the Australian morbidity and mortality rates. However, analysis indicates that current textual mass media in Australia, such as women’s magazines and newspapers, are not conveying accurate, evidence based information likely to promote healthy behaviours and adequate screening and are instead misinforming women/leading women astray.72 Murphy & Murphy from the Women’s Health Victoria survey found that although textual materials are a common source of health information, more personalised channels where women can engage with people such as GPs, family and friends, and the Internet are preferred.73 Textual sources are, however, used at a similar rate to the Internet, suggesting that they appeal to those who have the education, critical thinking and level of literacy to benefit from them.74 Women’s health centres A study from the Australian National University in the ACT, found that Women’s Health Centres are vital service and health information providers for Australian women. Analysis suggests their success arrises from providing or at least assisting women to find general and specific health information, supporting women in discerning and comprehending health information, as well as providing an empathetic ear and adequate time to listen to complex
70

St George, I. & Cullen, M. (2001). “The Healthline pilot: call centre triage in New Zealand”, New Zealand Medical Journal, 114(1140), 429-430. (ONLY GOT ABSTRACT) 71 Jones, S. (2004). “Coverage of breast cancer in the Australian print media —does advertising and editorial coverage reflect correct social marketing messages?”, Journal of Health Communications, 9(4), 310. 72 Jones, S. (2004). “Coverage of breast cancer in the Australian print media —does advertising and editorial coverage reflect correct social marketing messages?”, Journal of Health Communications, 9(4), 309-325. 73 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne 26. 74 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 26. 14

and sometimes distressing health and wellbeing issues women face.75 These centres provide women with information and understanding beyond a illness/disease and treatment medical model. A poignant quote highlighting how women’s centres can help women understand health issues further was; “If I go to the GP I feel l have to have an identifiable physical problem whereas I would go to a women’s health centre if I wanted to discuss more general troubling issues and wanted help in understanding beyond a purely physical symptom “76 Women consistently report that they feel rushed seeing GPs for health and wellbeing issues and that doctors could not provide adequate information and explanations during their average 10-15 minute consultations. 77, 78 Women’s Health centres can generally provide women with longer consultations or at least give attention and opportunities to learn and have informed discussions on health and wellbeing with other women. By providing a space for women to discuss their health these centres promote social networking and a space for peer learning and teaching which can provide a vital source of health information.79 Beyond providing a store credible health information, women’s health centres often providing links for women to access additional sources of health information and health care to meet their specific needs.80 Family and Friends The Women’s Health Victoria Survey found that young women particularly prefer informal networks such as family and friends for their health information.81 They rate these sources as their second preference despite the recognised unreliable quality of the information from these (often) lay sources.82 This finding, evidenced by American research suggests that younger women may like the personalisation and/or informality of receiving
75

Broom D. (1998) “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1), 5-22. 76 Broom D. (1998). “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1), 14. 77 Broom D. (1998). “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1), 13. 78 Murphy, M & Murphy, B. (2003). “Access to women’s Health information: A survey of Victorian women as Information Seekers, Women’s Health Victoria, Melbourne, 24 79 Broom D. (1998) “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1) 5-22. 80 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne,15-16. 81 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 13,15. 82 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 15,17,24. 15

health information from those they trust, and that ease of access and time may be a big factor in how they access health information.83 Murphy et al. noted the trend of young women readily accessing informal sources such as family and friends, mass media and the Internet to find confidential information on specific topics even though such sources are recognised as low in quality.84 This suggests that perhaps young women are using GPs just to confirm or dismiss the credibility of information found. Further studies suppose that younger women primarily rely on easily accessible information and seek institutional or qualified medical professionals as a later/last resort. 85, 86 Another Australian study by Smith et al. found that women of lower educational or functional level were often supported by their family and friends who sort out health information on their behalf and consequently played an important highly informed and supportive role in their health decisions.87 Families and friends in ethnic communities of shared religious, cultural or historical backgrounds have been found to provide a supportive network to learn and share health information in their community.88 The literature suggests that working with women within their community by identifying their collective health literacy needs, validating their personal experiences and providing a medium where they can engage in peer learning and understanding together is highly successful for engaging with women of CALD backgrounds.89 Pharmacists and other Allied Health professionals Pharmacists and other allied health professionals are also useful sources of health information reported by women.90 The Women’s Health Victoria found
83

Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s decision-making about their health care: views over the life cycle”. Patient Education and Counseing, 48, 225-231. 84 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 18. 85 Wathen, C. & Harris, R. (2007). “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651. 86 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 44-5. 87 Smith, S., Trevana, L., Nutbeam, D., Dixon, A., & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1805-1812. 88 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 21. 89 Williams-Brown, S., Baldwin, D., & Bakos, A. (2002). “Storytelling as a method to teach African American women breast health information”, Journal of Cancer Education, 17 (4), 227-230. 90 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural 16

that pharmacists were rated as second in quality of health information while were sixth in preference as a health information source.91 This indicates that although pharmacist and allied health remain and are acknowledged as a useful source of health information for Australian women, they are perhaps under utilised compared to other sources. Other allied health professionals such as pharmacists and nurse practitioners have shown success in being able to provide patients with more time for health information discussions during consultations and can involve patients more fully in their health care decisions.92, 93 Conclusion on Sources of health information The previous Australian women’s access to health information study suggests a combined approach where the provision of quality assured text and visual sources of health information are used in combination with visits to appropriate health care providers. Indeed evidence shows that repeating and extending information previously discussed in consultations with individuals though providing a variety of sources such as a specific pamphlets or recommended Internet websites, greatly increases the likelihood of firstly positive lifestyle changes, secondly, individuals taking medication as prescribed and thirdly, the correct use of preventative screening.94 Limitations to women’s access to information Even if women can assess quality health information not all women want more information but would rather solely rely on their GP’s (or another health care provider’s) opinion without question.95 A consistent limitation found in the literature is that women become confused by the volume of unclear, and often conflicting health information.96, 97 Indeed women report, “I’m just women search for health information”. Qualitative Health Research, 17(5), 639-651 91 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne 18. 92 Broom D. (1998) “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1) 5-22. 93 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651. 94 Murphy, M., Murphy B. & Kanost, D.(2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6. 95 Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s decision-making about their health care: views over the life cycle”. Patient Education and Counseling, 48, 230. 96 Nicholson, W., Gardner, B., Grason, H., Powe, N. (2005). “The association between women’s health information use and health care visits”. Women’s Health issues. 15(6), 240-248. 97 Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s 17

overwhelmed,” and “It’s tough on the Internet because there’s just too many options”98 Indeed, volume, poor quality and conflicting opinions in information creates more problems and questions than it answers. As discussed, there are numerous sources of health material differing greatly in quality, type and currency. However, improvements in women’s own and their family’s health will not happen unless certain barriers to using health information sources are overcome. The first of these is that of health literacy; it is important to ensure that women know how to source appropriate, quality information, comprehend it, and apply it to their lives. The second is to overcome barriers created by the information itself, such as it being incomplete or unspecific and not quality assured. Finally, there are barriers to using these sources of health information related to women’s time constraints and women’s specific circumstances.

decision-making about their health care: views over the life cycle”. Patient Education and Counseling, 48, 225-231. 98 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 643. 18

BARRIERS TO HEALTH INFORMAITON There are many barriers preventing women from accessing good quality health information. Firstly, there is the barrier of missing or unspecific health information that does not meet women’s needs. Secondly, there is the barrier of poor quality/ credibility undermining the usefulness of information. Thirdly, time poverty limits information providers and seekers’ access to information. Finally, there are particular barriers facing specific groups of women, such as young women, CALD women, those with poor literacy, or those seeking information on alternative therapies. Incomplete, unspecific and overgeneralised health information Despite the numerous sources discussed above, and the plethora of health information available, women still report not being able to access sufficient health information to meet their specific needs.99 Surprisingly there are few academic studies actually examining what types of health information women are seeking and what they feel is missing.100 These basic questions are essential for all health information service providers to ensure they are effective in enhancing women’s health and health literacy. Literature indicates what women want from a health information source is fourfold. Firstly, women want easily accessed factual information on illnesses, but they also want general information on health and wellbeing. Secondly, women want increased communication and personalisation of information through discussions with health professionals and others who share similar health and wellbeing issues. Having emotional support by being able to discuss issues with others who understand what they are going through, physically and emotionally, and for women to feel their opinion is respected, is essential for good communication and making positive health decisions. Finally, women want information to access professionals and experts in specific fields. These four elements of an optimal health information source are rarely found in one source.101 Health information is ineffective if it is not relevant to meet women’s needs, or if women are unaware of their current state of health and see no use in accessing health information. Parslow et al. reports, “Personally relevant health information is an important factor that can change individuals’ perceptions of their health needs.“102
99

Murphy, M. (2003). “Access to women’s Health information: Research Summary”, Women’s Health Victoria, Melbourne, 6. 100 Warner, D. & Procaccino, J.D. (2007). “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 101 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651.
102

Parslow, R., Jorm, A., Christensen, H. & Rodgers, (2004). “Use of medical 19

Women becoming more aware of the state of their health needs and risks is essential in promoting preventative health care, such as through participation in preventative screening. Effective programs promoting the change to a healthier lifestyle are an important tool in reducing the burden of preventable illness for women and society as a whole.103 In a study by Sullivan et al. early intervention program for individuals with risk factors for strokes, reported that the information they desire should (1) highlight the short and long term benefits, (2) be personally relevant, and (3) be able to be applied practically. Such findings point the way forward for other health information providers and health education/intervention programs.104 Credibility of information sources & quality assurance Even if women can access health information, it remains futile if the quality is poor. It is essential, therefore, that women can have quality information if it is to empower them to use it to positively influence their life choices. In 2003 Australian women reported the Internet, popular press and family/friends are frequent sources of health information despite their recognised questionable, and sometimes poor, quality.105 Reasons for this were barriers of lack of time and difficulty in accessing more reputable sources. Numerous studies show that the Internet is increasingly used by women to access health information.106, 107 The Women’s Health Victoria highlighted reasons why many women only end up with poor quality health information.108 Firstly, most women search for health information through general search engines which return links to often thousands of irrelevant, inaccurate and

services after participation in a community-based epidemiological health survey”. Social Psychiatry & Psychiatric Epidemiology, 39(4) 311. 103 Parslow, R., Jorm, A., Christensen, H. & Rodgers, (2004). “Use of medical services after participation in a community-based epidemiological health survey”. Social Psychiatry & Psychiatric Epidemiology, 39(4) 311-317. 104 Sullivan, K.,White, K., Young, R., Scott, C. & Mulgrew, K. (2008). “Developing a stroke intervention program: what do people at risk of stroke want?”, Patient Education & Counseling, 70(1), 126-134. – ONLY GOT ABSTRACT105 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 17-18. 106 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) “eHealth trends in Europe 2005-2007:a population-based survey”, Journal of Medical Internet Research, 10(4), e42. 107 Rahmqvist, m. & Bara, A. (2007). “Patients retrieving additional information via the internet: a trend analysis in a Swedish population, 2000-2005”. Scandinavian Journal of Public Health, 35(5), 533-539. 108 Murphy, M., Murphy, B. & Kanost, D. (2003). “A Literature Review of Women as information seekers”, Women’s Health Victoria, Melbourne. 20

outdated websites.109, 110 Secondly, many of these websites found are commercial, selling ‘medical’ products that have not undergone double-blind randomised controlled trials, essential for medical quality assurance.111 Instead, many of these sites rely instead on fraudulent claims and consumer testimonials.112 Frustration at conflicting information and the marketing agenda of information sources has been found to be a problem for women making decisions about hormone replacement or natural therapies in women going through menopause.113 Issues of quality assurance are particularly concerning considering that some studies analysed showed that women (in the face of barriers in accessing other sources) sometimes relied upon the Internet to diagnose and treat any illnesses.114 Literature including the Women’s Health Victoria showed that many women are unable or unsure of how to check the credibility of a website and report varying degrees of trust in the quality of internet information.115 If women continue to search for health information on the Internet, criteria to help them think critically about what they are reading is vital.116 Current literature indicates that the Internet is not a reliable source of patient information for some health issues. For example, a survey of the quality of websites providing health information on laparoscopy from popular search engines showed that out of 14 030 hits only 46 contained specific educational material and, when critically analysed, as many as 32 of these contained misleading, controversial health information. This leaves a highly unlikely approximately 0.099% chance of women looking on the Internet this way to
109

Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 37. 110 Warner, D. & Procaccino, J.D. (2004) “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 111 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 38. 112 Warner, D. & Procaccino, J.D. (2007). “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 113 Alfred, A., Esterman, A., Farmer, E., Pilotto, L. & Weston, K. (2006). “Women’s decision making at menopause; a focus group study”. Australian Family Physician, 35(4), 270-272. 114 Harris, R., & Wathen, N., (2007) ““If My Mother was Alive I’d Probably Have Called Her.” Women’s Search for Health Information in Rural Canada”. Reference and user services quarterly, 47(1), 67-79. 115 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 37-8. 116 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 37-9. 21

find accurate health information about this specific treatment.117 A consistent barrier in women accessing quality assured health information from the Internet is that many women are unaware of medically endorsed, quality assured websites, such as Medline.118 In Australia there are numerous medically endorsed websites e.g. NHIMAC, Healthinsite, The Better Health Channel( a Victorian Government website), The ABC Health & Wellbeing information portal and Informed Health Online. Through the Internet international websites such as MayoClinic.com, the British Medical Journal, OncoLink (for sound breast cancer information) and MEDLINEplus, are well endorsed quality assured websites free to public use. 119 However, such sites may be underutilized as a survey by The Australian Family Physician in 2006 found that’ “most women are unaware of existing reliable websites and call centres”.120 A related problem for many (especially older) women is their inexperience navigating the World Wide Web, further complicating effective use of this medium.121 The mass media and popular press also lack the quality of information needed by women to make positive health decisions. Several studies have highlighted how women’s magazines rarely focus on complicated issues significant to women and long-term health information. Rather than promoting positive health choices they tend to be more focused on weight loss (in rapid, sometimes unhealthy ways) and beautification.122 Time poverty for both info providers and women
117

Allen, J., Finch, R., Coleman, M., Nathenson, L., O’Rouke, N. & Fielding, G. (2001). “The poor quality of information about laparoscopy on the World wide web as indexed by popular search engines”. Surgical Endoscopy, 16, 170-172. 118 Warner, D. & Procaccino, J.D. (2004) “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 119 Fry, R. (2001). “Elixer of E-health”. Found at: http://www.abc.net.au/health/consumerguides/stories/2001/08/09/1837359.ht m 120 Alfred, A., Esterman, A., Farmer, E., Pilotto, L. & Weston, K. (2006). Women’s decision making at menopause; a focus group study. Australian Family Physician, 35(4), 270-272. 121 Dey, A., Reid, B., Godding, R., & Campbell, A., (2008). “Perceptions and Behaviour of access of the Internet: a study of women attending a breast screening service in Sydney, Australia”, International Journal of Medical Informatics, 77(1), 24-32. 122 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 40. 22

As discussed in the GP service provider section, lack of time is the leading barrier GPs give for providing patients with quality health information.123, 124 Additional research shows that health care providers are more likely to give health information to patients who ask for it, however, given that many patients already feel rush while seeing their GP it is likely that many feel unable to take up extra time and ask such questions.125 Some women even report limiting their consultation time or search for information, to prevent “taking up too much of their doctor’s time when other patients were waiting to be seen”.126 Thus, the strain of time poverty is directly affecting their access to health information. There is currently little literature on women’s lack of time and how it impacts on women’s health and health literacy. This is a promising area of research given the negative ramifications of lack of time. What is known is that women lack sufficient time to put their health as a priority. For example, the main barrier Kontos et al. found for women not accessing the to improve their health/internet literacy skills was lack of time due to work and family responsibilities.127 Time constraints often mean health information is delivered as a one-way factual transfer from health care providers to patients. This is less effective than a two-way dialogue where women actively develop their own decisionmaking, and practical skills for looking after their own and their families health.128 Only providing factual information is a short-term bandage for improving women’s health as, unless it can be applied practically, information is easily forgotten. Helping women to develop their health literacy by increasing consultation time, and investing time in women to ensure they can access, understand, and use quality health information is a much sounder long-term approach.129
123

Murphy, M., Murphy B. & Kanost, D.(2003), Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers, Women’s Health Victoria, Melbourne, 6. 124 Waters E, Haby M, Wake M, Salmon L. (2000). “Public health and preventive healthcare in children: current practices of Victorian GPs and barriers to participation”. Medical Journal of Australia,173 (2):68-71.(only got abstract) 125 Broom D. (1998) “By women, for women: the continuing appeal of women’s health centres”. Women & Health. 28(1) 5-22. 126 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 640. 127 Kontos, E., Bennett, G., & Viswanath, K. (2007). “Barriers and facilitators to home computer and Internet use among urban novice computer users of low socioeconomic position”, Journal of Medical Internet Resources, 9(4), 31. 128 Renkert, S. & Nutbeam, D. (2001). “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 129 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 23

Women’s recall under pressure/stress Another barrier scarcely discussed in current discourse is the fact that under stressful conditions, such as when one is in hospital or has an acute health condition, their ability to recall verbal information given by health care providers significantly reduces. This finding increases and is especially true for older women. Given that many women have competing health concerns and pressures, and they must juggle and manage family members health as well, not being able to recall once given health information is unsurprising.130 It is essential therefore that important health information provided to women while they are under stress or in acute situations, is also provided in a takehome written and visual format. If this cannot be done, health care providers must inform women of ways to access the information again. For example they could provide pamphlets recommending reputable websites with the same information (or even extending upon it in more depth) for women to refer to and be able to apply later. BARRIERS FOR SPECIFIC GROUPS OF WOMEN Young women and confidentiality Confidentially was highlighted as one of three major barriers facing women’s access to health information found in the previous Women’s Health Victoria, access to women’s health information reports. 131, 132 Confidentiality was particularly an issue for younger women seeking information from health care providers (eg GP’s) about sexual health and pregnancy matters eg on Sexually Transmitted Infections (STI’s) and drug/substance-use information. 133 Feeling unable to get the confidentiality on sensitive issues they require, research shows young women utilise reputable sources such GP’s less, in favour of selected family, peers, the Internet and mass media sources with whom they feel can more confident. 134 Incarcerated women and specific health needs Geographical and situational factors mean some women are unable to access mainstream health information sources. For example incarcerated women
130

Rushford, N., Murphy, B., Worcester, M., Goble, A., Higgins, R., LeGrande, M., Rada, J. & Elliot, P. (2007) “Recall of information received in hospital by female cardiac patients”. European Journal of Cardiovascular Prevention & Rehabilitation. 14(3), 463-469. 131 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 41. 132 Murphy, M (2003) “Access to women’s Health information: Research Summary”, Women’s Health Victoria, Melbourne, 8. 133 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 41. 134 Murphy, M (2003) Access to women’s Health information: Research Summary, Women’s Health Victoria, Melbourne. 24

have specific health information needs. One study of women in prisons reported great success in providing a radio channel for women promoting healthy living and wellbeing, positive mental health, and harm minimisation strategies. The success of the channel arose from meeting an otherwise unmet need, as women were encouraged to participate in the station by sending in questions on health and wellbeing topics they wanted discussed. This resulted in shared benefits for the source providers (knowing their service was appropriate and beneficial), and for the women actively engaging in health promotion and receiving the relevant health information they desired.135 Women seeking alternative non-western or medical health information Some women believe GPs stand in the way of accessing non-medicalised or non-westernise health information. Indeed studies report women feeling dismissed when their GP is reluctant to consider or provide information on alternate health care therapies. Indeed some women believe GP’s are narrow minded, never accepting or even considering alternative health options136 These women believe the over medicalisaiton of health is a barrier to the way they want their health to be managed and undermines their autonomy in choosing their health and treatment options in natural again. 137 Given the increasing trend of women seeking alternative options to manage their health and wellbeing, GP’s need to be better resourced in how to respond to women who want to find alternate information. Whether or not they help women confirm or dismiss the credibility of they information they should be at least be prepared to discuss (among themselves) the influence of alternative therapies on many women’s lives, and, with the women how (like any source), to critically analyse any information they find. Seeking non medical/alternate advice is especially prominent for issues such as menopause with many women not wanting to go down a ‘disease/ treatment’ path. Instead many women would rather view menopause as a natural progression and stage in their life in which they want to find out more health information about alternative treatments and basic lifestyle changes.138 Marginalised groups of women, with poor access to services or English
135

Minc, A., Butler, T. & Gahan, G. (2007). “Jailbreak Health Projectincorporating a unique radio program for prisoners”. International Journal of Drug Policy. 18(5)444-6. 136 Wathen, N & Harris, R. (2006). “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11. 137 Wathen, N & Harris, R. (2006). “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11. 138 Alfred, A., Esterman, A., Farmer, E., Pilotto, L. & Weston, K. (2006). “Women’s decision making at menopause; a focus group study”. Australian Family Physician, 35(4), 270-272. 25

literacy and comprehension skills Sufficient literacy and comprehension skills are vital for women accessing and utilising health information. If women are illiterate they are unable to read and comprehend textual health information drastically limiting the utility of most sources and the positive ramifications of good health information.139 Inadequate literacy and comprehension is also faced by women with whom English is a second language such as for many Culturally And Linguistically Diverse (CALD) women. Access to health information for CALD women will be discussed specifically later, but a major barrier to their improved health in Australia is because of inadequate materials and interpreters to meet the language acquisition and comprehension needs of these women.140 141 The Women’s’ Health Victoria Survey noted that women from CALD or indigenous backgrounds often couldn’t find linguistically appropriate information. Evidence shows marginalised women, especially those in poverty have significantly reduced ease of access to major sources of health information such as the internet.142 This is particularly concerning considering marginalised women consistently have poorer health, education, socioeconomic status and service utilisation compared to other Australian women, all detrimental risk factors for their ever increasing poorer health and wellbeing.143

139

Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 42. 140 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 46. 141 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne 6. 142 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers” , Women’s Health Victoria, Melbourne 19. 143 Murphy, M (2003) Access to women’s Health information: Research Summary, Women’s Health Victoria, Melbourne, 8. 26

TRENDS OF HEALTH INFORMAITON ACCESS FOR DIFFERING GROUPS OF WOMEN It is well acknowledged that specific groups of women have differing health and health information needs.144 This brief overview examines the health information needs and trends of specific groups of women in the ACT, such as culturally and linguistically diverse women (CALD), Indigenous women, women with disabilities, women with mental health concerns, young women, elderly women, pregnant women, carers, and women with multiple health concerns. Culturally and Linguistically Diverse Women In order for CALD women in the ACT to access health services and maintain a good level of health they require specific services to access health information. The Women’s Health Victoria 2003 literature review and survey highlighted two major issues CALD women face, and recommended two ways improve information access for these women.145 Firstly, the issues of concern were that health information accessible to these women was often not culturally appropriate, and that CALD women were under utilised existing services through which they could access more health information/ health care.146 Indeed, the overall survey results showed dissatisfaction with access to quality of health information was primarily a concern of women who had English as a second language.147 Additionally, issues of health care provider assumptions and prejudices have arisen as a barrier facing CALD women in receiving adequate health information. Avenues for improvement in CALD services showed women prefer to receive health information in a one-to-one manner from a trusted person rather than being given a translated information pack. The Internet was also highlighted an increasing avenue of linguistically appropriate health information and support.148
144

Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 44. 145 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 46-7 146 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, ,47 147 Murphy, M & Murphy, B. (2003) “Access to women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 28. 148 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, ,47

27

In 2004, a study by Simonian’s et al. focused on how to effectively convey health information to ‘women of colour’. The findings were unsurprising but significant: that CALD women respond more readily to health information that is aimed at their ethnicity and demographic. If women can receive information that discusses the health concerns of similar women and how they make use of health services they are more likely to realise their own health risks and respond by making positive health choices, such as participating in breast cancer screening.149 Narrative based information and storytelling is another way to engage CALD women with health information. Williams-Brown et al. highlighted that using story-telling could connect CALD women to service providers, correct misinformation, enhance peer learning about health concerns and validate personal experiences.150 This method is another way to make health information more specific to particular groups of women and thus more accessible, relevant and successful in promoting women’s health and wellbeing. Research from the Australian Health Review indicates that immigrants often have significant unaddressed health needs.151 Indeed, Temple-Smith et al. found that 77% reported outstanding, unaddressed health problems despite 63% already having consulted a health care provider in Australia. Lack of interpreters and lack of appropriate information on health services they could utilise were cited as the reasons for these unaddressed problems. 152 This appears to be an international trend with other peer-reviewed studies showing a lack of culturally and linguistically diverse health information.153 Finally, an issue of concern which has been discussed more freely in recent years, is that of discrimination, insensitivity, and prejudice from health care providers when working with women from CALD backgrounds. Canadian research on the experience of Muslim migrants found that women experience discrimination when accessing the healthcare system. Not only did they face a
149

Simonian, K., Brown, S., Sanders, D., Kidd, C., Murillo, V., Garcia, R. & Marks, S. (2004). “Breast health information: messages that appeal to young women and older women of colour”. Journal of Cancer Education, 19(4), 2326. 150 Williams-Brown, Baldwin, D. & Bakos, A. (2002). “Storytelling as a method to teach African American women breast health information”. Journal of Caner Educaiton, 17(4), 227-230. 151 Cooke, R., Murry, S., Carapetis, J., Rice, J., Mulholland, N. & Skull, S. (2004) “Demographics and utilisation of health services by pediatric refugees from East Africa: implications for service planning and provision”. Australian Health Review, 27 (2), 40-45. 152 Cooke, R., Murry, S., Carapetis, J., Rice, J., Mulholland, N. & Skull, S. (2004) “Demographics and utilisation of health services by pediatric refugees from East Africa: implications for service planning and provision”. Australian Health Review, 27 (2), 40-45. 153 Reitmanova, S. & Gustafson, D. (2008). “They can’t understand it”: maternity health and care needs of immigrant Muslim women in St. John’s, Newfoundland. Maternal and Child Health Journal, 12(1),101-111. 28

significant lack of culturally and linguistically appropriate material (when accessing maternity services) they also encountered prejudice and stereotyping.154 Such ill-treatment of women is unacceptable, and highlights the need for an improvement of CALD services and training for health care providers. Indigenous women Indigenous women are subject to disadvantage from many directions. Generally, indigenous women have a lower socio-economic status, poorer health, lower utilisation of healthcare services, greater morbidity of preventable illness, lower educational attainment and poorer access to health information.155, 156 Thus, Indigenous women are particularly in need of improved health literacy and access to quality health information. This brings into focus the need to improve literacy and comprehension levels among this group of women and the importance of the provision of easy to understand, verbal, or highly visual information.157 There is evidence that health care and information providers can successfully engage with Indigenous women. For example one Australian study which responded to previously unaddressed issues such as risk factors for chronic illness and climacteric (i.e. menopausal) symptoms. The success of the project arose from collaborating with local Indigenous elders and artists to help provide appropriate health information materials which was translated into traditional and vernacular language and was culturally sensitive to indigenous women’s needs.158 Such a method of collaboration to improve health provider trust within the community, connect women to service providers, and produce health information (on health promotion) has the potential to benefit other marginalised groups of women. Women with Disabilities Disabilities are generally defined as any restriction, limitation or lack, resulting in impairment to perform normal activities of daily living, likely to last for at
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Reitmanova, S. & Gustafson, D. (2008). “They can’t understand it”: maternity health and care needs of immigrant Muslim women in St. John’s, Newfoundland. Maternal and Child Health Journal, 12(1),101-111. 155 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 45-6 156 Murphy, M (2003) Access to women’s Health information: Research Summary, Women’s Health Victoria, Melbourne, 7-9. 157 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 46. 158 Davis, S, Knight, S., White, V., Claridge, C., Davis, B. & Bell, R. (2003). “Climacteric symptoms among indigenous Australian women and a model for the use of culturally relevenat art in health promotion”. Menopause. 10(4)345351. (ONLY GOT ABSTRACT) 29

least six months.159 In 2003 the Australian Bureau of Statics found that the disability rate in the ACT was 16% of the population and that: “One in five people in Australia (3,958,300 or 20%) had a reported disability in 2003... Of those with a reported disability, 86% (3,387,900) were limited in the core activities of self care, mobility or communication, or restricted in schooling or employment.”160 There is also a high percentage of the Indigenous community with a disability.161 There is significant research indicating that although individuals with a disability have greater needs in accessing health care and health information, they face more disadvantage and significant barriers in attempting to do so. 162 For example, women with visual impairment expressed frustration “that most educational materials about health issues that concern them were written materials, rendering them useless.”163 Disabled women also identified negative stereotyping from health care providers and short consultation times were an issue of concern. These women often reported feeling depersonalised and burdensome to health care providers, especially when doctors were unable to provide facilities or advice to meet their needs. When it becomes too difficult for women with disabilities to access local health services for appropriate health information, the Internet often turned to as a source of disability specific information.164 However, on the Internet information is not presented by a person (which has been found to be more effective) and there are questions of quality assurance and potential harm.165
159

Australian Bureau of Statistics (2003). (4430.0) “Disability, Aging and Carers, Australia: Summary of Findings, 2003”. Australian Bureau of Statistics, Canberra. Found at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features1 2003?OpenDocument 160 Australian Bureau of Statistics (2003). (4430.0) “Disability, Aging and Carers, Australia: Summary of Findings, 2003”. Australian Bureau of Statistics, Canberra. Found at: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features1 2003?OpenDocument 161 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 46. 162 McColl, M., Forster, D., Hunter, D., Dorland, J., Goodwin, M. & Rosser, W. (2008) “Physician Experience Providing Primary Care to People with Disabilities”, Health Care Policy, 4(1), e129-147. 163 Smeltzer, S., Sharts-Hopko, N., Ott, B., Zimmerman, V., & Duffin, J. (2007) “Perspectives of Women with Disabilities on Reaching Those Who Are Hard to Reach”, Journal of Neuroscience Nursing. 39 (3), 167. 164 Murphy, M., Murphy, B. & Kantos, D. (2003). “Access to Women’s Health information: A literature review of women as health information seekers”, Women’s Health Victoria, Melbourne, 49. 165 Murphy, M (2003) “Access to women’s Health information: Research Summary”, Women’s Health Victoria, Melbourne, 8-9. 30

Young Women The Women’s Health Victoria literature review on women as information seekers highlighted that the main issue for young women seeking health information is confidentiality,166 with survey results showing that young women used family and friends, mass media and the Internet far more than older women.167 The Journal of Medical Ethics provides an example of the research around confidentiality issues deterring young people from consulting their GPs. They found that as adolescent girls mature they are increasingly concerned about the confidentiality of what they discuss with service providers and are consequently reluctant to consult their physician for health care and information. This is epically true if young women want to discuss sensitive issues such as sexual health, contraception, bullying, depression and the misuse of illicit drugs.168 Such research indicates that young women would rather go without quality information than face the risk of having their confidence on sensitive issues broken. Perhaps confidentiality and reluctance to see GPs contributes to why young women are the leading seekers of health information from the Internet.169 Older Women In Australia in 2003, older women reported significant problems with, and concerns around, accessing health information, especially on issues specific to their needs such as menopause (and hormone replacement therapy).170 Inadequate access to information needed was especially hard for older women who did not have dependent children (to help them access the Internet) or who were unwell, living alone, or less educated.171, 172 Older women are generally more dependent on their primary health care provider, less autonomous, and less assertive than younger women. As a result they consult their GP more frequently to meet their health information

166

Murphy, M., Murphy, B. & Kanost, D. (2003). “A Literature Review of Women as Information Seekers”, Women’s Health Victoria, Melbourne,44-5 167 Murphy, M (2003) “Access to women’s Health information: Research Summary”, Women’s Health Victoria, Melbourne, 11. 168 Carlisle, J., Shickle, D., Cork, M. & McDonagh, A. (2006). “Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration”. Journal of Medical Ethics, 23(3), 133-137. 169 Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008). “eHealth trends in Europe 2005-2007:a population-based survey”, Journal of Medical Internet Research, 10(4), e42. 170 Murphy, M., Murphy, B. & Kanost, D. (2003) “A Literature Review of Women as Information Seekers”, Women’s Health Victoria, Melbourne,45. 171 Murphy, M., Murphy, B. & Kanost, D. (2003). “A Literature Review of Women as Information Seekers”, Women’s Health Victoria, Melbourne,45. 172 Murphy, M (2003) “Access to women’s Health information: Research Summary”, Women’s Health Victoria, Melbourne, 12. 31

and health care needs.173, 174 Older women, however, continue to frequently turn to family, friends and other women who share health issues to find health information from a trustworthy sensitive source when they can not find it from mainstream sources.175,176 Pregnant women/mothers Not all groups of women face barriers in accessing health information specific to their needs. Mothers and pregnant women generally report good access to health information from a variety of sources. These women often use maternal, family and children’s health services to a greater degree and through having children have many opportunities to hone their skills of accessing and applying health literature to meet their needs. Correlating with having dependent children is an increased likelihood of access to the Internet and the health literature available on it.177 Carers The Women’s Health Victoria studies highlighted two major barriers for women who are carers to access appropriate quality health information. The first was due to the fact that many female carers who seek information on behalf of individuals with poor health/ a disability greatly prefer to access health information through discussing it one-on-one with a GP or support service. This limits the sources of health information available to personalised mediums, and, given the GP/women’s time pressures, means carers may not be getting health information they require to meet their and their family’s health care needs.178 Women with multiple health issues Finally, literature shows that some women have a combination of health problems or other issues which marginalise them in society, such as those from CALD backgrounds, the illiterate, and those with mental health issues. It is hard for these marginalised women to find health information and services addressing the combination of their specific needs. These women consistently
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Murphy, M., Murphy, B. & Kanost, D. (2003) “A Literature Review of Women as Information Seekers”, Women’s Health Victoria, Melbourne, 45. 174 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne 15, 29. 175 Wathen, C. & Harris, R. (2007). “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651. 176 Murphy, M., Murphy, B. & Kanost, D. (2003) A Literature Review of Women as Information Seekers, Women’s Health Victoria, Melbourne,45. 177 Murphy, M. & Murphy, B. (2003). Access to Women’s Health information: A survey of Victorian women as Information Seekers, Women’s Health Victoria, Melbourne, 28. 178 Murphy, M., Murphy, B. & Kanost, D. (2003) “A Literature Review of Women as Information Seekers”, Women’s Health Victoria, Melbourne, 47. 32

slip through health care gaps.

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HEALTH LITERACY Understanding Health literacy Health literacy has been defined as, “the degree to which individuals have the capacity to obtain, process and understand basic health information and services to make appropriate health decisions.”179 Health literacy affects all aspects of health knowledge and health care. Its influences reach from being individuals able to navigate through the health care system, to accessing and understanding health prevention, screening, diagnosis and treatment options to adequately meet one’s current and future needs.180 Health literacy also encompasses a sound understanding of ones own health, health risks and needs in order to know what is appropriate health information to utilise.181 There is also evidence of “a strong association between health literacy and self-efficacy” with respect to some women’s health issues (such as decision making on hormone replacement therapy). Adequate health literacy to know what one can do to improve health, and good self-efficacy, to have the knowledge and belief in oneself to make any needed changes, has huge ramifications for optimising women’s health outcomes.182 Australia’s health literacy deficiency The Department of Health and Aging recently reported that 60% of Australians lack the basic health literacy skills to acquire, understand and use health information needed to meet everyday needs.183 In terms of improving the national level of health literacy, and applying it, Australia trails behind other western countries.184 Therefore, programs to improve individual’s health literacy through education need to be developed.
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Institute of Medicine (2004), as cited in, Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1806. 180 Torres, R. & Marks, R. (2009). “Relationships among health literacy, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55. 181 Torres, R. & Marks, R. (2009). “Relationships among health literacy, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55. 182 Torres, R. & Marks, R. (2009).. “Relationships among health literacy, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55. 183 Nutbeam, D. (2009) “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 184 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 34

Improved health literacy does not just mean providing women with more health information, as information alone will not promote lasting behaviour changes.185 Instead, health literacy is needed to engage with the health information, empower women to understand it, make decisions that promote health, engage in health prevention strategies, access health services and encourage a positive and healthy attitude.186 Benefits of good health literacy There is consistent evidence in the literature analysed that indicates how good health literacy promotes positive lifestyle choices and health outcomes.187, 188 Research indicates that health literacy is vital if individuals are going to engage with preventative health care and take active measures to reduce their risk of preventable illness.189 Individuals need to understand and evaluate complex health information and be autonomous decision makers given many women’s current time pressures.190 Practical applications of health literacy include being able to read medical documents (such as consent forms or medication instructions),191 knowing when and how one should go about being screened for disease,192 knowing when bodily functions are symptomatic of ill health, and knowing how and where to seek necessary health care assistance.193, 194 Research shows low
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Renkert, S. & Nutbeam, D. (2001) “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 186 VonWagner, C., Knight, K., Steptoe, A., & Wardle, J. (2007). “Functional heath literacy and health promoting behaviour in a national sample of British adults”. Journal of Epidemiology & Community Health, 61(12), 1089. 187 Nutbeam, D. (2009). “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 188 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 189 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 190 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1805-1812 191 Hardyman, R., Hardy, P., Brodie, J., Stephens, R. (2005) “It’s Good to Talk Comparison of a Telephone help line and website for cancer information”. Patient Education and Counselling, 57, 315-320. 192 Torres, R. & Marks, R. (2009). “Relationships among health literacy,, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health. Journal of Health Communication, 14(1)43-55. 193 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 194 Renkert, S. & Nutbeam, D. (2001) “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 35

health literacy reduces individual’s understanding of their health, compliance with health plans, and results in poorer management of their health.195 A sufficient degree of health literacy also allows individuals to communicate with health care providers in a more balanced and informed manner. Interviews with women indicate that low health literacy is linked to worsened interactions with health care providers.196 Low health literacy means patient’s can be overwhelmed by doctor’s language,197 do not feel respected for what information/ understanding they do have, and feel patronised.198 Women want more opportunities to weigh up options, be informed and make decisions regarding all details of their health and wellbeing. Knowledge is power, and improving health literacy allows patients to be independent managers of their health. Good health literacy ensures that women can engage in productive conversations with their health care providers. This helps the GP/patient relationship to be one of trust and mutual respect, allows for the negotiation of health care decisions, and equalises the sharing the power and responsibility for maximising women’s health.199 Improved health literacy has also been shown to improve patient satisfaction.200 The Women’s Health Victoria briefly touched on the necessity for women to have a certain level of health literacy to understand health care professionals, and ask appropriate questions.201 This is especially true in the twenty first century given the increasing time constraints.202 Australia carries a huge burden of chronic and preventable illness, and a lot more preventative work could be done if Australian’s health literacy was improved.203
195

Torres, R. & Marks, R. (2009). “Relationships among health literacy,, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55 196 Torres, R. & Marks, R. (2009). “Relationships among health literacy,, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55. 197 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 198 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information”. Qualitative Health Research, 17(5), 639-651. 199 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social Science & Medicine, 69, 1805-1812. 200 Adams, R., Stocks, N., Wilson, D. & Hill, C. (2009). “Health literacy a new concept for general practice?”, Australian Family Physician, 38(3), 144-147. 201 Murphy, M., Murphy B. & Kanost, D. (2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6-7. 202 Torres, R. & Marks, R. (2009). “Relationships among health literacy,, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1), 43-55. 203 Oldroyd J, Proudfoot J, Infante F., Davies, G., Bubner, T., Holton, C., 36

Detriments of poor health literacy One study found that low health literacy in pregnant women resulted in reduced self-efficacy to cope with pregnancy, the birth of their child and subsequently poorer health and wellbeing outcomes for the mother and child.
204

International research consistently indicates low health literacy is linked to poorer physical and psychological health and results in higher morbidity and mortality. 205 Recent Japanese research indicates that, even after adjusting for socio-economic status, engagement in risky health behaviours, and chronic health conditions, having low health literacy was still significantly correlated with lower reported physical and psychological health and wellbeing.206 Low health literacy has huge ramifications for an individual’s future health and use of health care services as a whole. For example, low health literacy has been associated with a poor understanding of one’s own health (and the prevention of chronic illnesses), less use of preventative health strategies (such as vaccinations and screening), reduced use of primary health services, reduced likelihood of taking medications as prescribed, poor self-care, reduced ability to interact and engage with health care providers, a greater cost and burden on health care services and finally higher mortality.207 Thus, the long-term ramifications of poor health literacy will not only drastically impede upon the health of individual women, but will also influence the future health of the nation.208, 209 Demographically, poor health literacy increases with age, low educational level and low income.210 Men generally have poorer health literacy than Beibly, J., & Harris, F. (2003). “Providing healthcare for people with chronic illness: the views of Australian GPs” Medical Journal of Australia, 179, 30-33. 204 Renkert, S. & Nutbeam, D. (2001). “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 205 Tokuda, Y. Doba, N., Butler, J., Paasche-Orlow, M. (2009). “Health literacy and psysical and psychological wellbeing in Japanese adults”, Patient Education and Counseling, 75, 411-417. 206 Tokuda, Y. Doba, N., Butler, J., Paasche-Orlow, M. (2009). “Health literacy and psysical and psychological wellbeing in Japanese adults”, Patient Education and Counseling, 75, 411-417. 207 Tokuda, Y. Doba, N., Butler, J., Paasche-Orlow, M. (2009). “Health literacy and psysical and psychological wellbeing in Japanese adults”, Patient Education and Counseling, 75, 411-417. 208 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social Science & Medicine, 69, 1805-1812. 209 Nutbeam, D. (2009) “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 210 VonWagner, C., Knight, K., Steptoe, A., & Wardle, J. (2007). “Functional heath literacy and health promoting behaviour in a national sample of British 37

women, however, regardless of gender, education, ethnicity, age and income, better health literacy still significantly increases women’s self-rated level of health, and the chance of engaging in daily health promoting behaviours.211 This is an important point for effective health promotion as it clearly shows poor health literacy is part of a complex tapestry of disadvantage which remains unaddressed in Australia.212 Limitations of health literacy The limitations to improving health literacy are similar to those of providing health information sources for women to access. That is, even given sources, understanding, and opportunities to use health information, time poverty or the priority women place on health may limit its success. Even if women achieve high levels of health literacy they can still be overwhelmed with too much heath information and become confused.213 Another limitation is that many women are given health information that is only factual rather than increasing their health literacy and decision making skills.214 While this provides women with access to health information it is only a small part of health literacy and the understanding, using and empowering of women to be masters of their health is what is vital. As recommended later, possibilities to address this are numerous, such as following the UK’s trials of adult education programs to develop adults’ health literacy skills and work out how to apply quality health information to their lives.215

adults”. Journal of Epidemiology & Community Health, 61(12), 1089. 211 VonWagner, C., Knight, K., Steptoe, A., & Wardle, J. (2007). “Functional heath literacy and health promoting behaviour in a national sample of British adults”. Journal of Epidemiology & Community Health, 61(12), 1089. 212 VonWagner, C., Knight, K., Steptoe, A., & Wardle, J. (2007). “Functional heath literacy and health promoting behaviour in a national sample of British adults”. Journal of Epidemiology & Community Health, 61(12), 1089. 213 Wathen, N & Harris, R. (2006) “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 4. 214 Renkert, S. & Nutbeam, D. (2001). “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 215 Nutbeam, D. (2009). “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 38

VALIDITY OF IMPROVING WOMEN’S ACCESS TO HEALTH INFORMATION IN THE ACT Women report lack of information In 2003 the Women’s Health Victoria survey revealed that 30% of women report poor access to health information, or were unsure if health information they could access was adequate to meet their needs. This suggests that many women, while not completely dissatisfied with information they can access are not completely satisfied.216 Further evidence from the United States suggests that women are especially articulating their desire for detailed health information. A study by Ziegler et al. found that 76% of 2500 adults using an outpatient clinic reported they wanted more information from their GPs concerning possible adverse effects of medications.217 Of particular concern is that women who have lower physical, psychological and social health report a great lack and greater difficulty in accessing quality health information to begin to meet their needs.218 Women are the main source of health information for themselves and their family Across the globe, and for hundreds, if not thousands of years, considerable evidence suggests that women are the primary managers and decisionmakers of their and their family’s health and wellbeing needs.219, 220, 221 Across their lifespan, women are acknowledged as the largest group seeking health information222and utilising healthcare services.223 Women use a combination of
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Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 28. 217 Ziegler D., Mosier, M., Buenaver, M. & Okuyemi, K. (2001). “How much information about adverse effects of medication do patients want from physicians?”, Archive of Internal Medicine, 161, 706-713. 218 Arora, N., Johnson, P., Gustafson, D., McTavish, F., Hawkins, R., & Pingree, S. (2002). “Barriers to information access, perceived health competence, and psychosocial health outcomes: to test a medication model in a breast cancer sample”. Patient Education & Counselling, 47(1), 37-46. 219 Warner, D. & Procaccino, J. (2004). “Towards Wellness: Women Seeking Health Information”, Journal of the American Society for Information Science and Technology, 55(8), 709-730. 220 Wathen, N & Harris, R. (2006) “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11 221 Pandey, S., Hart, J. & Tiwary, S. (2003) “Women’s health and the Internet: understanding emerging trends and implications”, Social Science & Medicine, 56, 179-191. 222 Warner, D. & Procaccino, J. (2004). “Towards Wellness: Women Seeking Health Information”, Journal of the American Society for Information Science and Technology, 55(8), 709-730. 223 Pandey, S., Hart, J. & Tiwary, S. (2003) “Women’s health and the internet: understanding emerging trends and implications”, Social Science & Medicine, 39

both active and passive sources to find health information to meet their and their family’s needs.224 Further research also indicates that women are often the catalyst in young men’s (i.e. their boyfriends) lives to improve their health by encouraging self-awareness of their health, the effective use of health services, and by helping them to access appropriate health information.225 Women are expressing a desire to access better health information Recent years has seen a huge increase in pressure on individuals to be more responsible for their health, especially to reduce risk factors for preventative health conditions and remain active participants in society.226 With this increased responsibility many women have expressed a desire to take a more active role in the decision-making process.227 Analysis of current literature consistently shows that women want to be more active participants in health information seeking and the decision making process.228 The only way to make well-informed choices and be ‘responsible consumers’ is though accessing, comprehending, and discussing quality health information with their peers and health care providers.229 Improved decision making and communication Studies suggest those who participate in health decision have better health outcomes and many women report they want more involvement in this process.230 Despite the fact that women surveyed desired a shared decision making process, 50% of patients believed their doctor and made the main health decision and 35% believed the physician had not taken their opinion seriously.231 Giving women more and better quality health information 56, 179-191. 224 Wathen, C. & Harris, R. (2007) “I try to take care of it myself” How rural women search for health information. Qualitative Health Research, 17(5), 639-651. 225 Marcell, A., Howard, T., Plowden, K. & Watson, C. (2009). “Exploring Women’s perceptions about their role in supporting partners’ and sons’ reproductive health care”. American Journal of Men’s Health, 5(11), 1-9.(23) 226 Smith, S., Dixon, A., Trevena, L., Nutbeam, D. & McCaffery, K. (2009). “Exploring patient involvement in healthcare decision making across different education and functional health literacy groups”. Social science & Medicine, 69, 1805-1812. 227 Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s decision-making about their health care: views over the life cycle”. Patient Education and Counseling, 48, 225-231. 228 Warner, D & Procaccino, J. (2007). “Women seeking health information: distinguishing the web user”. Journal of Health Communication, 12(8), 787814. 229 Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s decision-making about their health care: views over the life cycle”. Patient Education and Counseling, 48 (3), 225-231. 230 Nutbeam, D. (2009). “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 231 Stewart, D., Abbey, S., Shanek, Z. Irvine, J., Grace, S. (2004). “Gender 40

increases the likelihood of effective communication with health care providers and inturn optimises shared decision making. 232 Strong evidence shows that many Australian women want more health information from health care providers on treatment options, costs, alternative therapies, and possible adverse effects.233 Patients who actively participate in the decision making process have been found to have better outcomes than those who are more passive.234 Multiple mediums of health information One study suggests that women who have suffered a heart attack reported receiving less health information for their recovery trajectory. This could be a result of prejudice giving men more factual information, or could be that women under pressure may remember the information less clearly then men, or what information women are given simply seems inadequate to what they feel they ought to know.235 This brings to light the role of providing information in both verbal and written forms, as health care providers seek to increase the self-efficacy and satisfaction of the patients. The Women’s Health Victoria confirmed this observation, finding printed information combined with a health care consult substantially increases patient’s uptake of healthy lifestyle choices. This combined approach should be used more widely to improve screening and medication compliance.236 Government responsibility for a climate of patient autonomy If governments want to reduce the burden of chronic and preventable illnesses on society they must recognise that they need to provide the resources for people to manage their own self care, engage in preventative differences in health information needs and decisional preferences in patients recovering from an acute ischemic coronary event” Psychosomatic Medicine, 66, 47. 232 Warner, D & Procaccino, J. (2007). “Women seeking health information: distinguishing the web user”. Journal of Health Communication, 12(8), 787814. 233 Murphy, M., Murphy B. & Kanost, D. (2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 10. 234 Stewart, D., Abbey, S., Shanek, Z. Irvine, J., Grace, S. (2004) “Gender differences in health information needs and decisional preferences in patients recovering from an acute ischemic coronary event”, Psychosomatic Medicine, 66, 42-48. 235 Rushford, N., Murphy, B., Worcester, M., Goble, A., Higgins, R., LeGrande, M., Rada, J. & Elliot, P. (2007). “Recall of information received in hospital by female cardiac patients”. European Journal of Cardiovascular Prevention & Rehabilitation. 14(3), 463-469. 236 Murphy, M., Murphy B. & Kanost, D.(2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6. 41

health care measures, and make positive lifestyle choices.237 Education has been an important part of health promotion strategies in the 20th century, however, it is important to extend this by actively seeking to improve women’s autonomy with regards to making informed health care decisions.238 One way to do this would be to not only increase access individual’s access to health information and health literacy. For example, the A healthier future for all Australians 2009 report suggests encouraging engagement by including health literacy as a core element of the National Curriculum for schools, setting the agenda for “an agile and self-improving health care system”.239

237

Wathen, N & Harris, R. (2006). “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11. 238 Nuttbeam, D. (2000) “Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century” Health Promotion International, 15.3, 259-267. 239 National Health and Hospitals Reform Comission. (2009) A healthier future for all Australians Final Report of the National Health and Hospitals Reform Commission – June 2009. Commonwealth of Australia, Canberra, 7. 42

RECOMMENDATIONS Numerous recommendations were made in the articles reviewed. Many focused on specific channels of health information or the needs of particular groups. Some have the potential to help improve Australian women’s health literacy and access to good quality, current health information to meet their needs. Valuing women’s access to health information Firstly, it is essential that health care providers and governments recognise the value of improving women’s access to, and comprehension of, health information. Women desire better access to quality health information to improve their, and their family’s, health and wellbeing.240 Thus, improving quality access to health information and health literacy has the potential to greatly improve the health of women in the ACT, especially where preventable or treatable diseases are concerned. This is confirmed through several recommendations that women be autonomous, and for health care providers to listen to, and work with women, sharing information.241 Valuing women’s health literacy means a change from the patriarchal GP/patient relationship to one that promotes mutual sharing of information and active autonomy. Increasing patient knowledge of health matters (making them more informed or more misinformed) and increasing patient autonomy, has been a major reason GPs are sometimes reluctant to promote health literacy. It also affects the traditional Doctor/patient relationship and how health decisions are made. To ensure that doctors are not faced with misinformed patients questioning their ability to understand and discern what evidence based health information, GPs and other health care providers must promote public access to quality assured health information sources (such as endorsed websites). Doctors could also mediate and help individuals to learn to discern and critically analyse health information they find.242 243 Provide multiple quality sources concurrently An important finding of this literature review is that providing quality health information concurrently in a number of different formats improves the recall, use, and its application to women’s lives. This is particularly crucial when
240

Ziegler D., Mosier, M., Buenaver, M. & Okuyemi, K. (2001). “How much information about adverse effects of medication do patients want from physicians?”, Archive of Internal Medicine, 161, 706-713. 241 Belle-Brown, J., Carroll, J., Boon, H. & Marmoreo, J. (2002). “Women’s decision-making about their health care: views over the life cycle”. Patient Education and Counseling, 48, 225-231. 242 Warner, D. & Procaccino, J.D. (2007). “Towards Wellness: Women seeking health information: distinguishing the web user”. Journal of the American Society for information science and Technology, 55(8), 708-730. 243 Torres, R. & Marks, R. (2009). “Relationships among health literacy, knowledge about hormone therapy, self efficacy and decision making among postmenopausal health”. Journal of Health Communication, 14(1)43-55. 43

women are under acute stress as verbal health information concerning longterm issues may easily be forgotten.244 Thus, Rushford et al. recommends that providing additional sources of information (as well as telling patients) during acute events and rehabilitation is critical to promote health and wellbeing.245 Research also points to advantages in using a combined approach by health care providers, using additional media such as pamphlets, books or websites.246 Giving women multiple sources increases their autonomy, allowing them greater ability to select what information they utilise. This is already being done in rural Canada, with women reporting: “I don’t think I can point out just one [source]. I think it’s a combination of things…I kind of take the advice that I get from all of those and see what suits… in the end I’m the one that has to make the choices to what is best for my family” 247 Providing multiple sources of information is especially valuable during consults, diagnosis, and at life transitions such as pregnancy, retirement, or the loss of a loved one.248 Any health information source or health education program must combine (1) practical applications to individual’s lives (2) transfer of information in a personalised manner and (3) be provided in combination with health care provider services. Although the Internet provides a range of quality health information materials it lack the personalised contact. However, some evidence is beginning to indicate that online support groups could provide the emotional support, encourage women and reduce isolation during illness.249 Make health care providers and individuals aware of information sources’ limitations
244

Rushford, N., Murphy, B., Worcester, M., Goble, A., Higgins, R., LeGrande, M., Rada, J. & Elliot, P. (2007). “Recall of information received in hospital by female cardiac patients”. European Journal of Cardiovascular Prevention & Rehabilitation. 14(3), 463-469. 245 Rushford, N., Murphy, B., Worcester, M., Goble, A., Higgins, R., LeGrande, M., Rada, J. & Elliot, P. (2007). “Recall of information received in hospital by female cardiac patients”. European Journal of Cardiovascular Prevention & Rehabilitation. 14(3), 463-469. 246 Murphy, M., Murphy B. & Kanost, D.(2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6. 247 Wathen, N & Harris, R. (2006). “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11. 248 Murphy, M., Murphy B. & Kanost, D.(2003). “Access to Women’s Health Information: A Literature Review of Health Professionals as Information Providers”, Women’s Health Victoria, Melbourne, 6. 249 Hardyman, R., Hardy, P., Brodie, J., Stephens, R. (2005) “It’s Good to Talk Comparison of a Telephone help line and website for cancer information”. Patient Education and Counselling, 57, 315-320. 44

All sources of health information have their limitations and none completely meet the health literacy needs of all women. Awareness of the potential for good and harm from the Internet is paramount given its continued rise in popularity as a health information channel.250 This further heightens the need for Internet websites to accommodate for a range of audience levels of literacy and confidence. There is huge potential for harm as search engines lead individuals to disreputable, outdated or commercial information.251 Australia needs tighter regulation of products and services that make claims to improve individual’s health, particularly for the sale of products that have not undergone independent double-blind placebo tests. This will ensure that the trust between medical and alternative health care providers remains unblemished and patient’s health is not compromised. Provide authoritative endorsements of quality websites One way to do this, recommended by many of the articles reviewed, is to have government, or other authoritative organisations, such as Breast Cancer Australia, endorse reliable and accurate health information sources/websites such as the BreastScreen NSW website.252, 253 One suggestion is that the Australian Medical Association or Government health bodies could create a brand or seal to make endorsed websites easily identifiable to those seeking health information from the internet. In order that these endorsed health information websites continue to provide quality health information, they must be intensively monitored and managed. This would require resources to ensure information is kept up to date with current health research and are protected from outside interference. For the success of government and (reputable) organisational recommended websites it would also be essential to have these sites well publicised to health care providers and the public.254
250

Kummervold, p., Chronaki, C., Lausen, B., Prokosch, H., Rasmussen, J., Santana, S., Staniszewski, A. & Wangberg, S. (2008) eHealth trends in Europe 2005-2007:a population-based survey, Journal of Medical Internet Resources, 10(4), e42. 251 Kontos, E., Bennett, G., & Viswanath, K. (2007). “Barriers and facilitators to home computer and internet use among urban novice computer users of low socioeconomic position”, Journal of Medical Internet Resources, 9(4), 31. 252 Dey, A., Reid, B., Godding, R., & Campbell, A., (2008). “Perceptions and Behaviour of access of the internet: a study of women attending a breast screening service in Sydney, Australia”, International Journal of Medical Informatics, 77(1), 24-32. 253 Cowan, C. & Hoskins, R. (2007) Information preferences of women receiving chemotherapy for breast cancer, European Journal of Cancer Care, 16(6), 543-550. 254 Alfred, A., Esterman, A., Farmer, E., Pilotto, L. & Weston, K. (2006). “Women’s decision making at menopause; a focus group study”. Australian Family Physician, 35(4), 270-272. 45

The US suggests that Internet moderators are vital to ensure quality information. In some countries (and in Victoria) intensive monitoring and promotion of some reputable websites already are already underway through some government health information portals.255 Improve the personalisation of health information to make it more specific to individuals needs Personal stories of others who come from a similar demographic, or of whom are going through a similar health or illness trajectory, help to personalise health information. This increases women’s connectedness with others reducing the isolation felt by many when facing illness. Listening to personal stories also has been shown to help women be more proactive in asking questions of their health providers, or confirming the trust they place in health care providers.256 Physical and online groups should be set-up and supported (e.g. through subsidised meeting facilities or web space). Health information sources must recognise that their effectiveness can be improved if they provide relevant, practical applications, not simply a factual monologue. Health care providers being mediators in individual’s health literacy Health care providers should be more proactive in preventative health through helping individuals improve their own health literacy.257 This could be done (1) though community courses to help individuals improve their health literacy,258 online, (2) through multimedia tutorials (on how to find reputable information sources and not be lead into commercial sites), (3) through telephone hotlines (providing direction on how to access health information), or (4) though heath care providers, such as nurse practitioners, sitting down with women and holistically assessing their needs and together finding quality, up-to-date sources.259, 260 ,261Such interactive health information programs may begin to
255

Wathen, N & Harris, R. (2006). “An examination of the health information seeking experiences of women in rural Ontario, Canada”, Information Research, 11(4), 1-11. 256 Sillence, E., Briggs, P., Harris, P., & Fishwick, L. (2007) How do patients evaluate and make use of online health information? Social Science & Medicine, 64 (9), 1853-1862. 257 Nutbeam, D. (2001). “ Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259-267. 258 Murphy, M. & Murphy, B. (2003). “Access to Women’s Health information: A survey of Victorian women as Information Seekers”, Women’s Health Victoria, Melbourne, 43. 259 Nutbeam, D. (2001). “ Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259-267. 260 Nutbeam, D. (2009). “Building health literacy in Australia”, Medical Journal of Australia, 191(10), 525-6. 261 Sullivan, K.,White, K., Young, R., Scott, C. & Mulgrew, K. (2008). 46

help fill the need women have voiced in sorting the multitude of information.
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The success of such nurse run programs have been in providing an empathetic, understanding ear when information is found and helping women to rate the credibility of sources and general advice and refereeing of women to other sources or health care providers if they are unsure.263 Another way to improve the nations health literacy, and engagement in preventative health care, is through providing GPs with incentives to spend sufficient time developing these skills in their patients. Given the current medical system, time is money, and lack of time and remuneration means health care providers are not (consistently making or) encouraged to make long term investments in their patients. A way to change this would be to restructure how GPs are payed. Given a sufficient salary means GPs would have little reason to rush patients though and could embrace the benefits of helping individuals improve their health literacy though assisting with their access to, comprehension of, and application of quality health materials in their lives. This has the potential to drastically reduce the burden on the tertiary health care system in the future. Promote health literacy in other public forums Previous research has noted the potential for public libraries or GP/hospital libraries to help provide training and support in health literacy needs.264, 265 Such libraries could serve as portals for individuals to access information in a variety of formats (e.g. pamphlets, books, visual or audio materials) or sources recommended by their GP or the Australian Medical Association. Small Australian pilot trials showed women were the greatest uses, and 98% of borrowers found the item “useful” or “very useful” and had increased their knowledge, decreased anxiety or changed their behaviours in a positive way. The GPs in such trials felt positively towards having the information libraries as they could “save time explaining complex conditions” and it was useful to reinforce messages, increase patient understanding, and provide further depth.266 However, problems have arisen when doctors feel patients know “Developing a stroke intervention program: what do people at risk of stroke want?”, Patient Education & Counseling, 70(1), 126-134. – ONLY GOT ABSTRACT(don’t really need- you can delete) 262 Mason, M. (2008). “Listening to women’s problems”. Nursing Standard, 2329; 22(46), 24-25. 263 St George, I. & Cullen, M. (2001). “The Healthline pilot: call centre triage in New Zealand”, New Zealand Medical Journal, 114(1140), 429-430. (ONLY GOT ABSTRACT- can use Mason above if cant get) 264 Charlton, I. (1997.) “Usefulness of a patient library in a suburban general practice”, Medical Journal of Australia, 167,579-581. 265 Harris, R., & Wathen., N. (2006). “If my mother was alive I’d probably have called her”: women’s search for health information in rural Canada, Reference & User Services Quarterly, 47(1), 67-79. 266 Charlton, I. (1997.) “Usefulness of a patient library in a suburban general practice”, Medical Journal of Australia, 167,579-581. 47

more about a particular health concern than themselves.267 Promote individuals to improve their health awareness and health literacy Finally, evidence shows that increasingly patients must take more responsibility for their health with an eye both now and to the future. To do this individuals must be aware of the impact of good health literacy can have on their lives and be encouraged to become more literate in health matters. Engagement with health information has repeatedly been shown to improve health outcomes. Improving national health literacy It is vital to monitor national health literacy and explore ways to improve it. Developing health literacy is often not a priority for busy Australian women. Changing this mindset and helping people to see the benefits of improved health literacy and positive lifestyle change is a challenge. Public relations and marketing campaigns either showing the consequences of ignoring one’s health (literacy) or the benefits of developing this skill are one way of making health literacy a national priority. Some research suggests that given the ramifications of good or poor health literacy, it should be added as a social determinant of one’s health 268. It encouraging to see the Australian government taking action to place health literacy as “a core element” of the new National Curriculum for schools.269 It is hoped that this will not simply focus on facts but teach students to critically analyse any health information and apply it (or not) to their lives. School health literacy programs would a prime opportunity to counter misconceptions about lack of GP confidentiality for young women. Further research needs to be done on young people’s existing health information usage patterns. Help should also be given to service/information providers to simplify their education materials and improve communication with those of poorer health literacy.270 Further research to understand women’s current health literacy, what information is missing and how they comprehend and apply it is a must. Current health education programs, such as antenatal classes, can be improved by finding out the difference between what health information
267

Charlton, I. (1997.) “Usefulness of a patient library in a suburban general practice”, Medical Journal of Australia, 167,579-581 268 Nutbeam, D. (2001). “ Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259-267. 269 National Health and Hospitals Reform Commission. (2009). “A healthier future for all Australians Final Report of the National Health and Hospitals Reform Commission – June 2009”. Commonwealth of Australia, Canberra, 7. 270 Tokuda, Y. Doba, N., Butler, J., Paasche-Orlow, M. (2009). “Health literacy and psysical and psychological wellbeing in Japanese adults”, Patient Education and Counseling, 75, 411-417. 48

providers think they give and what women report as receiving. Not simply providing more factual information but helping to develop women’s decision making skills and practical applications of health and wellbeing information is a more long-term solution271. Of particular in Australia is the health of indigenous women, particularly those who are illiterate. Providing materials in local languages, more visual forms and health care providers who are trained to help indigenous women find, comprehend and utilise these materials essential if indigenous population health is to be improved. Coordinating with indigenous elders to identify and meet the needs of communities is the first step. Another way to ensure programs to reduce the risk of preventable illness and promote healthy lifestyle choices are utilised is to renumerate women who participate. The structure for this already exists through Centrelink’s skill development programs for the unemployed. Investing in such strategies may appear initially costly, but considering the burden of chronic illness of the tertiary health care system, it may represent a long-term saving. Need to change the GP/patient relationship There is a great need to change the GP/patient relationship to one of mutual power, respect, and responsibility. Increasingly GPs recognise that their role is not simply to operate in a treatment paradigm but to managing their natural progression of health changes. Lee & Garvin’s research highlights how the transfer of information in a hierarchical one-way manner is insufficient to change individual recipients’ health outcomes. Instead it is essential that health care providers attempt to engage with patients and exchange information in a more balanced two-way dialogue.272 One study at diabetic’s care plans showed far better results for those who took an active part in making health decisions.273 Where there is still debate among experts, health care providers are best served by being honest with patients, providing them with the most current recommendations while acknowledging uncertainty. For example, issues such as the debate around hormone replacement therapy for menopausal women.274 Longer GP consultation times was a consistent recommendation, despite
271

Renkert, S. & Nutbeam, D. (2001). “Opportunities to improve maternal health literacy through antenatal education: an exploratory study”. Health Promotion International, 16(4), 381-388. 272 Lee, R. & Gavrvin (2003) “Moving from information transfer to information exchange in health and health care”, Social Science & Medicine, 56, 449-464. 273 Elwyn, G., Edwards, A., Kinnersley, P. (1999) “Shared decision making in primary care: the neglected half of the consultation”. British Journal of General Practice, 49, 478. 274 Alfred, A., Esterman, A., Farmer, E., Pilotto, L. & Weston, K. (2006). “Women’s decision making at menopause; a focus group study”. Australian Family Physician, 35(4), 270. 49

being costly.275 The British Journal of General Practice highlighted that a consultation which included the elements of (1) the provision of clear information (2) clarification and questioning from the patient (3) willingness to share and discuss decisions, and (4) agreement between the GP and patient about the problem and plan represents the benchmark for good general practice consultations in the 21st century.276 Considering time constraints, and lack of reimbursement are leading causes for GPs not providing adequate health information the Government should investigate increasing connotation time or restructuring Medicare incentives to promote preventative health care. There is also a need for research into women’s and health care provider’s time poverty and its negative ramifications on health. Another major recommendation for health care providers is for them to improve their training for responding to CALD women’s needs. This needs to cover a philosophy of tolerance towards cultural difference as well as relevant specific studies of cultures. An investment in translation services and engaging health care providers from CALD backgrounds to help liase is also likely to have a positive outcome for these marginalised groups. Creating scholarships for Australians and immigrants (for health care degrees) for those from language groups and ethnicities currently under represented in the health care system would be one good investment in ensuring the health care system can meet the needs of a multicultural Australia. A continually unaddressed barrier for disabled women is the lack of disability friendly buildings and transport to get to such places which can provide health information and services to meet their needs. The Role of Women’s Health Centres Research indicated that the demand for women’s health centres will increase in the future given the fact that they give women the personal contact, trust and time women need to discuss sensitive health issues.277 The benefits of women’s health centres are in that they provide a service unlike the treatment oriented acute health care system, and are more focused on providing more generalised more generalised health information being aware of the holistic picture of women’s circumstances and social context. While the centres cannot always hope to meet the specific needs of women they encounter they are well placed to provide referrals to other local health services and information. Women’s health centres could provide another medium for providing health and Internet literacy skills. This could be done by having classes and trained
275

Elwyn, G., Edwards, A., Kinnersley, P. (1999) “Shared decision making in primary care: the neglected half of the consultation”. British Journal of General Practice, 49, 477-482. 276 Elwyn, G., Edwards, A., Kinnersley, P. (1999) “Shared decision making in primary care: the neglected half of the consultation”. British Journal of General Practice, 49, 478. 277 Mason, M. (2008) “Listening to women’s problems”. Nursing Standard, 2329; 22(46), 24-25. 50

staff able to help women navigate the web and go about finding reputable sites. Older women could especially benefit from such programs, which could build their confidence in other sources of health information rather than relying solely on expensive and time pressured GP consults.

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CONCLUDING COMMENTS Executive Summary The major findings of this literature review were; • • • • • • • • • Women are active seekers of health information for themselves and their families. • Women find health information from a variety of sources, including GPs, family and friends, pharmacists, the Internet and mass media. • GPs are the preferred source of health information for Australian women • The Internet is increasingly being used as a convenient and inexpensive health information source, particularly by young women. • While the Internet is awash with health literature, most women’s awareness of its limitations and ability to source credible sites remains imperfect. • There remain groups of women with specific difficulties in accessing information to meet their needs (eg those with English as a second language) • There are many barriers undermining the value of health information, e.g. unspecific overgeneralised information, illiteracy, women’s time poverty etc. • The need to improve women’s health literacy is paramount given the ramifications for individual’s in applying health information effectively

The major recommendations were; • • • • • • • Increased valuing of women’s access to health information. • A change in the GP/patient relationship from one-way provision of information to one where women are active participants in their health care decisions. • Health care expenditure needs to prioritise health literacy, preventative health care and the time for contact between patients and health care providers • Existing sources of quality health information need to be better publicised such as medically endorsed websites. These also need to be kept up to date with current evidence based literature. • Changes need to be made to the provision of health information to ensure it is understood, acted upon and effective. Health literacy needs to be promoted in individuals and in public forums and its long-term impact on improving the health of individuals and reducing the burden of the acute medical system needs to be made know. • Specific attention needs to be given to reducing barriers and increasing access to health information for marginalised groups of women The continued role and value of Women’s Health Centres as mediums for women to access information and improve their health literacy skills. 52

• •

Conclusion Significant research as discussed in this literature review highlights the deficiency in women’s access to health information and the importance of improving this situation. While brief, it is hoped this literature review will stimulate discussion about how this could be done in the Australian context. While research on the ACT is lacking, women from the area could provide a good population for a pilot study in improving health literacy and women’s access to health information. In the past women’s health literacy and access to health information has been undervalued, but, such a study could provide further confirmation of its importance in reducing the burden of preventable and chronic illness on the health care system and optimising women’s health and wellbeing.

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