Patient perspectives: Kathi Apostolidis

Rebecca Aris interviews Kathi Apostolidis

In this new series we will be hearing from patients on their own unique experiences 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 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 funding to offer 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 difficult health situations, when I understand the problem and how my doctor and 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 before 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 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 patient organization and see how I could help upgrade the services and practical resources for newly diagnosed patients. I was amazed with the richness of disease information, practical information and helplines I had found 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 on marketing, management, Public Affairs, HR and adoption of social media. Recently, I co-founded and chaired 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. Pharma often finances projects, presented by patient organisations, without requesting a funding proposal and not checking afterwards whether the funding was used for the purpose requested. There needs to be complete transparency of how funding of patient organisations is conducted and whether funding 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 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 gain a lot from training in basic management, marketing, accounting skills. This could be achieved through offering 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 in management / leadership seminars.

Pharma could also assist patient organisations by offering credible, unbiased, independent disease specific information in their native language. Patient organisations offer only very basic disease specific information 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 local communities 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 staff participating in local eco-campaigns, sponsoring disease awareness events, funding non-profit organisations, etc.

“Pharma has the means to offer to society in many ways and personally, I would welcome such activities.”

There 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 offer 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 information on new drugs or detailed information about 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 the settlement of overdue debt, had resulted in the disappearance of key medicines from 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: 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 understanding of what social media could offer. Directors and management tend to believe that social media is futile, a waste of time and that engagement is not something that concerns them. They see it as an office task which 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 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 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 effort for 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 for healthcare advocacy, awareness campaigns and fundraising 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 for health professionals 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 following common sense and generally accepted business practices. Social media, even in an industry as highly regulated as pharma can be a satisfying 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 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 transmit personal, biased views. Pharma would only gain, if it considered engaging directly with patient organisation 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 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 five years, several offline and online patient communities and groups have emerged. This is a result of the fast expansion of the internet and social media but also a result of the high cost of establishing and running a formal organisation. Members of these groups opt for directness, immediate availability of medical and other information of importance to patients. They often start their group through online meetings with other persons with same disease and by sharing similar problems. These 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 for change in healthcare. This rise of the e-patient highlights that there are patients who want to be heard, advocate and share their experiences.

The 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 successfully used internet resources and online / offline rotator cuff tear patient communities to learn about options and alternatives for shoulder and rotator cuff 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 &amp, welfare benefits for cancer patients, training volunteers to staff the helpline and in setting the bases for a robust cancer patient rights advocacy program. Kathi blogs on healthcare related issues and is active in social media in healthcare. Professionally, she is a Public Affairs Consultant.

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What do you think pharma can do to really understand patient’s needs?