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How do you think pharma can do to really understand patient’s needs?
Patient perspectives: Kathi Apostolidis
Post ed 8t h Sept ember 2011 in Art icles, Int erviews | Add a comment
Rebecca Aris interviews Kathi Apostolidis In this new series we will be hearing f rom patients on their own unique experiences and perceptions of pharma. In this, the f irst of the series, we speak with Kathi Apostolidis , a breast cancer survivor f rom Greece. A vocal e-patient, she is actively involved with patient organisations and will be speaking at the upcoming 2011 European Multidisciplinary Cancer Congress in Stockholm later this month. Kathi speaks with us on what pharma can do to improve perceptions of them, and how pharma has more than just f unding to of f er patient organisations. Interview Summary RA: Hi Kathi, I’d like to start by asking you to tell me about your experience as a patient. KA: I can better cope with dif f icult health situations, when I understand the problem and how my doctor and I can cooperate towards a cure. T he lessons I have learnt are: • Learn about your condition • Reach out and talk to other patients, f riends, and relatives and share experiences • Prepare yourself f or your medical appointment, don’t hesitate to question your doctor • If your symptoms persist, don’t hesitate to retell your story to the doctor and share your concerns. • Follow your doctors instructions, if you do not recover, always ask him f irst bef ore abandoning the therapy prescribed Under the constraint of the 10 minute medical appointment in the public healthcare system, your doctor does not have the time, the energy or even the training to f ully explain to you everything about your condition. T he lesson I’ve learnt is that going unprepared to a medical appointment is bad f or your health. “…going unprepared to a medical appointment is bad for your health.” RA: Have you been involved with any patient organisations? KA: Soon af ter my f irst breast cancer in 1990, I decided to join the local breast cancer patient organization and see how I could help upgrade the services and practical resources f or newly diagnosed patients. I was amazed with the richness of disease inf ormation, practical inf ormation and helplines I had f ound on the internet, visiting the websites of Y-ME, NBCC, CancerResearch, BreastCancerAction, etc.

and wanted to work towards adopting these services in Greece. I have joined several Greek cancer patient organisations volunteering my prof essional services on marketing, management, Public Af f airs, HR and adoption of social media. Recently, I co-f ounded and chaired the Cancer Patient Rights Advocacy Program of f ering psycho-social support to cancer patients. T he Program aims to raise awareness of patient rights and the existing legislation. I am also a member of European and US cancer patient organisations and work with them on specif ic projects. RA: How could patient organisations cooperate with pharma? KA: Pharma could help patient organisations to grow and develop meaningf ul patient services. Pharma of ten f inances projects, presented by patient organisations, without requesting a f unding proposal and not checking af terwards whether the f unding was used f or the purpose requested. T here needs to be complete transparency of how f unding of patient organisations is conducted and whether f unding really serves actual needs of patients. It should be noted that many European patient organisations actively seek to cooperate with pharma companies, since it seems that it is their sole f unding source. RA: Could pharma assist patient organisations in any other way besides funding? KA: Pharma could also help patient organizations in knowledge transf er. Patient organizations would gain a lot f rom training in basic management, marketing, accounting skills. T his could be achieved through of f ering seminars or other resources on basic management and f inancial management of non-prof its or through sponsoring participation of patient organisation members to continuous education / training in management / leadership seminars. Pharma could also assist patient organisations by of f ering credible, unbiased, independent disease specif ic inf ormation in their native language. Patient organisations of f er only very basic disease specif ic inf ormation rather than the in-depth knowledge that the empowered patient looks f or. RA: Would you like to see pharma getting more involved with society? KA: In an ef f ort to prove their good citizenship, many pharma companies collaborate with the local communities in which they operate, f unding projects of common interest, e.g. of f ering home care to elder and children patients, sponsoring educational events, of f ering equipment f or a playground, pharma staf f participating in local eco-campaigns, sponsoring disease awareness events, f unding non-prof it organisations, etc. “Pharma has the means to offer to society in many ways and personally, I would welcome such activities.” T here are many ways, in which pharma could get more involved with society, but the question remains whether they really want it. Pharma has the means to of f er to society in many ways and personally, I would welcome such activities. RA: What could pharma do to improve how it is perceived? KA: Patients perceive pharma as a non-transparent healthcare stakeholder because pharma does not openly publish research, clinical trial results, advanced inf ormation on new drugs or detailed inf ormation about adverse events. Patients f eel that pharma hides some aspects of medicine inf ormation f rom them. In addition, the high prof its that pharma makes in Greece do not appear to be in line with their claim of big losses due to the long overdue settlement by the state of medicines’ deliveries to public hospitals. T he recent withdrawal of medicines’ deliveries by pharma in order to push the government to expedite the settlement of overdue debt, had resulted in the disappearance of key medicines f rom pharmacies. It was considered purely unethical to let diabetes, cancer and other patients without critical medicines. It is not a secret that pharma does not have a positive image in Greek society. If pharma wants to be

perceived positively by Greek patients and the population in general, it will have to patiently rebuild a trust-worthy reputation of “partners in health”. RA: Do patient organisations use social media to promote their cause? KA: T he majority of European patient organisations in the cancer community use social media very little if at all. T his is not only due to lack of experienced staf f but mostly to a mistrust and lack of understanding of what social media could of f er. Directors and management tend to believe that social media is f utile, a waste of time and that engagement is not something that concerns them. T hey see it as an of f ice task which can be entrusted to another staf f member or outsourced to a third party. “I do not believe that pharma is actually ready and willing to engage with patients and patient organisations” T he f ew patient organisations’ involvement with social media has been mostly repetitive announcements, as opposed to engagement. Success in social media tends to be measured solely by the number of f ollowers and some organisations despite the lack of engagement have a considerable number of f ollowers, with very f ew of them being active. T his is considered suf f icient and de-motivates any ef f ort f or improvement. During the last three years, European umbrella organizations have begun to acknowledge the importance of social media. But newcomers need to be better educated with hands-on workshops. If someone has little knowledge of the Internet and is not guided through social media channels step by step, he will rarely use them on his own. I consider social media to be an excellent tool f or healthcare advocacy, awareness campaigns and f undraising and I am honoured to have been invited to present at the 2011 European Multidisciplinary Cancer Congress in Stockholm. It will be a great opportunity f or health prof essionals and patients to participate in a workshop that aims to initiate participants in the use of social media. RA: how do you think pharma could engage with patient organisations using social media? KA: Pharma could engage with patient organisations by f ollowing common sense and generally accepted business practices. Social media, even in an industry as highly regulated as pharma can be a satisf ying social encounter. Pharma is still hesitant to use social media despite the noise about FDA / corporate social media guidelines. I do not believe that pharma is actually ready and willing to engage with patients and patient organisations, despite examples to the contrary. When pharma learns how to be social then it will be easy f or them to engage with social partners, such as patient organisations. Af ter all, health is social. Pharma has direct contact with only one or two persons in every patient organisation, who may transmit personal, biased views. Pharma would only gain, if it considered engaging directly with patient organisation members in an open and f rank conversation about their concerns with the disease, their therapies, and the adverse events they f ace. T here are many ways to engage with a greater number of members of a patient organisation beyond the Chair and one-two Directors, and social media can be an easy, widespread, direct means. “These small very active online and offline patient communities, grow in the shade of surveys on patient movement.” By not engaging in social media, pharma limits its knowledge of emerging trends in patient groups. During the last f ive years, several of f line and online patient communities and groups have emerged. T his is a result of the f ast expansion of the internet and social media but also a result of the high cost of establishing and running a f ormal organisation. Members of these groups opt f or directness, immediate availability of medical and other inf ormation of importance to patients. T hey of ten start their group through online meetings with other persons with same disease and by sharing similar problems. T hese small very active patient communities grow in the shade of surveys on patient movement.

Another development is the growing number of independent patients who like to be heard and get active in social media to share their experience and to advocate f or change in healthcare. T his rise of the epatient highlights that there are patients who want to be heard, advocate and share their experiences. T he next patient perspective interview will be live on pharmaphorum on 22nd September. About the interviewee: Kathi Apostolidis is cancer survivor and an active patient advocate. Kathi has been internet savvy since the early nineties. She has used the internet and online patient communities to educate herself on breast cancer, healthcare and patient advocacy issues. In 2006 and 2008, she successf ully used internet resources and online / of f line rotator cuf f tear patient communities to learn about options and alternatives f or shoulder and rotator cuf f tear surgery. Kathi is a member of cancer patient organizations in Greece and internationally, and has served as Member, Chair of standing committees, trainer, speaker, campaigner. She has been instrumental in developing a guide of social insurance & welf are benef its f or cancer patients, training volunteers to staf f the helpline and in setting the bases f or a robust cancer patient rights advocacy program. Kathi blogs on healthcare related issues and is active in social media in healthcare. Prof essionally, she is a Public Af f airs Consultant. Linked IN: http://www.linkedin.com/in/kathiapostolidis twitter: www.twitter.com/kgapo , www.twitter.com/opnHealth blog: http://epatientgr.wordpress.com f acebook: www.facebook.com/kathiapostolidis www.facebook.com/# opnhealth What do you think pharma can do to really understand patient’s needs?

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