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Pharmaphorum Interview

Pharmaphorum Interview

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Published by Kathi Apostolidis

Interview with Rebecca Aris of Pharmaphorum on patient experience and patient expectations from pharma.

Interview with Rebecca Aris of Pharmaphorum on patient experience and patient expectations from pharma.

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Published by: Kathi Apostolidis on Feb 09, 2013
Copyright:Attribution Non-commercial


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How do you think pharma can do to really understandpatient’s needs?
Patient perspectives: Kathi Apostolidis
Posted 8th September 2011 in Articles, Interviews |Add a comment
Rebecca Aris interviews Kathi Apostolidis
In this new series we will be hearing from patients on their own uniqueexperiences and perceptions of pharma.In this, the first of the series, we speak with Kathi Apostolidis , a breast cancer survivor from Greece. A vocal e-patient, she is actively involved with patientorganisations and will be speaking at the upcoming
2011 European Multidisciplinary Cancer Congress
in Stockholm later thismonth.Kathi speaks with us on what pharma can do to improve perceptions of them, and how pharma has morethan just funding to offer patient organisations.
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 difficult health situations, when I understand the problem and how my doctoand I can cooperate towards a cure.The lessons I have learnt are:• Learn about your condition• Reach out and talk to other patients, friends, and relatives and share experiences• Prepare yourself for 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 first bef ore abandoning thetherapy prescribedUnder the constraint of the 10 minute medical appointment in the public healthcare system, your doctodoes not have the time, the energy or even the training to fully explain to you everything about your condition. The lesson I’ve learnt is that going unprepared to a medical appointment is bad for your health.
“…going unprepared to a medical appointment is bad for your health.” 
RA: Have you been involved with any patient organisations?
KA: Soon after my first breast cancer in 1990, I decided to join the local breast cancer patientorganization and see how I could help upgrade the services and practical resources for newly diagnosedpatients. I was amazed with the richness of disease information, practical information and helplines I hadfound 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 professional services onmarketing, management, Public Affairs, HR and adoption of social media. Recently, I co-founded andchaired the Cancer Patient Rights Advocacy Program offering psycho-social support to cancer patients.The 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 specific projects.
RA: How could patient organisations cooperate with pharma?
KA: Pharma could help patient organisations to grow and develop meaningful patient services. Pharmaoften finances projects, presented by patient organisations, without requesting a funding proposal andnot checking afterwards whether the funding was used for the purpose requested. There needs to becomplete transparency of how funding of patient organisations is conducted and whether funding reallyserves actual needs of patients.It should be noted that many European patient organisations actively seek to cooperate with pharmacompanies, since it seems that it is their sole funding source.
RA: Could pharma assist patient organisations in any other way besides funding?
KA: Pharma could also help patient organizations in knowledge transfer. Patient organizations would gaina lot from training in basic management, marketing, accounting skills. This could be achieved throughoffering seminars or other resources on basic management and financial management of non-profits or through sponsoring participation of patient organisation members to continuous education / training inmanagement / leadership seminars.Pharma could also assist patient organisations by offering credible, unbiased, independent diseasespecific information in their native language. Patient organisations offer only very basic disease specificinformation rather than the in-depth knowledge that the empowered patient looks for.
RA: Would you like to see pharma getting more involved with society?
KA: In an effort to prove their good citizenship, many pharma companies collaborate with the localcommunities in which they operate, funding projects of common interest, e.g. offering home care to elder and children patients, sponsoring educational events, offering equipment for a playground, pharma stafparticipating in local eco-campaigns, sponsoring disease awareness events, funding non-profitorganisations, etc.
“Pharma has the means to offer to society in many ways and personally, I would welcome suchactivities.” 
There are many ways, in which pharma could get more involved with society, but the question remainswhether they really want it. Pharma has the means to offer to society in many ways and personally, Iwould 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 notopenly publish research, clinical trial results, advanced information on new drugs or detailed informationabout adverse events. Patients feel that pharma hides some aspects of medicine information from them.In addition, the high profits 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.The recent withdrawal of medicines’ deliveries by pharma in order to push the government to expedite thesettlement of overdue debt, had resulted in the disappearance of key medicines from pharmacies. It wasconsidered 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 atrust-worthy reputation of “partners in health”.
RA: Do patient organisations use social media to promote their cause?
KA: The majority of European patient organisations in the cancer community use social media very little if at all. This is not only due to lack of experienced staff but mostly to a mistrust and lack of understandingof what social media could offer. Directors and management tend to believe that social media is futile, awaste of time and that engagement is not something that concerns them. They see it as an office taskwhich can be entrusted to another staff 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” 
The few patient organisationsinvolvement 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 followers and some organisations despite the lack of engagement have a considerable number of followers, with very few of them being active. This is considered sufficient and de-motivates any effortfor improvement.During the last three years, European umbrella organizations have begun to acknowledge the importanceof social media. But newcomers need to be better educated with hands-on workshops. If someone haslittle knowledge of the Internet and is not guided through social media channels step by step, he willrarely use them on his own.I consider social media to be an excellent tool for healthcare advocacy, awareness campaigns andfundraising and I am honoured to have been invited to present at the 2011 European MultidisciplinaryCancer Congress in Stockholm. It will be a great opportunity for health professionals and patients toparticipate 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 following common sense and generally acceptedbusiness practices. Social media, even in an industry as highly regulated as pharma can be a satisfyingsocial encounter.Pharma is still hesitant to use social media despite the noise about FDA / corporate social mediaguidelines. I do not believe that pharma is actually ready and willing to engage with patients and patientorganisations, despite examples to the contrary. When pharma learns how to be social then it will beeasy for them to engage with social partners, such as patient organisations. After all, health is social.Pharma has direct contact with only one or two persons in every patient organisation, who may transmitpersonal, biased views. Pharma would only gain, if it considered engaging directly with patientorganisation members in an open and frank conversation about their concerns with the disease, their therapies, and the adverse events they face. There 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 aneasy, 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. Duringthe last five years, several offline and online patient communities and groups have emerged. This is aresult of the fast expansion of the internet and social media but also a result of the high cost oestablishing and running a formal organisation. Members of these groups opt for directness, immediateavailability of medical and other information of importance to patients. They often start their groupthrough online meetings with other persons with same disease and by sharing similar problems. Thesesmall very active patient communities grow in the shade of surveys on patient movement.

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