Jan Geissler was my dream candidate for a first interview with European epatients. Jan is one of the few true European patient voices and has been active online for over a decade. I asked Jan to tell us the story of how he became an e-patient in Germany, the differences he sees between European and US e-patients as well as the leading sources of information are for CML online (and whether any of them are provided by pharma, of courses).
My name is Jan Geissler, today aged 37. I studied business at Universities in the UK and Germany, focusing in the areas of innovation and technology management, marketing and business informatics, and was also doing software development during my studies. In 1999, I joined the “technology think tank” in the media giant Bertelsmann, a small multidisciplinary innovation team focusing on peer to peer, search and mobile technologies. I then co-founded a startup within the corporation that focused on mobile internet services, long before the first internet-capable phone was released. After some years, I joined Vodafone R&D where I was leading a multinational team responsible for business modelling of R&D innovation projects, covering topics like MobileTV, ePaper and mHealth. I have always been at the forefront of innovative services on the Internet – you can also name me a “new services and devices geek” Today I am founder and managing director of Patvocates, an organisation focused on Patient Advocacy, Social Media and Cancer Policy.
After my first 2 years in the job, I became very engaged as a patient advocate. The reason was that I had been diagnosed in 2001 with a rare cancer, Chronic Myeloid Leukemia, in a routine check-up. Over a weekend in 2002, I started a blog and online forum for patients in German speaking countries, Leukaemie Online. I just intended to share all I learned about results from clinical trials with new targeted treatments that was about to turn the therapy for my cancer upside down. At the time of my diagnosis, there was barely any information about these new treatments available in German language – which was astonishing, given that German is one of the most common languages across Europe! I had the privilege of speaking English well, I found out more, joined a clinical trial about 400km away from my home town, and then thought – why not share what I learned with others who don’t speak English enough? This is how I started the blog. It quickly became a very frequented social community for leukemia patients in German-speaking countries.
I want to make sure patients have all information at hand to be able to discuss with their doctor and take an informed decision on how their cancer is treated. Patients have only one life. They need to be able to know everything they need to take tough decisions. Printed information is quite often outdated and does not reflect state of the art, given the frequency of news in cancer research – both good and bad – is breathtaking. In addition, medical information e.g. from scientific conferences is often not made available to patients, allegedly to protect “consumers” from “advertising” – as if we were taking more cancer drugs when digesting information about them! With my activities, I want to make sure patients have access to relevant information in a language they understand — on an equal eye level with the medical community.
In the area of my cancer, we have been quite successful with it. We have founded a global community of patient groups, the CML Advocates Network, which is today linking up 55 patient groups in 45 countries. We share information about newest research, about how to run patient groups, and how to support patients best globally. Research, regulation and industry is coordinated on an international scale today – we patient groups must be likewise.
It’s been a great experience. The Internet has really empowered us patients to work on a global level, requiring considerably little money. Cultures, needs and regulatory systems are different, but sharing experience helps greatly to understand the needs and develop tools for the whole community. In fact, our German leukemia patient community benefits a lot from our international network too, as we benefit from what other patient advocates or clinicians in e.g. the USA, Singapore or Australia do. Through global collaboration we’ve become a respected partner by the professional community. In the end, I think there is a lot of benefit of the “Internet grassroots movement” to the individual patient.
Increased collaboration of all stakeholders with patient groups is very important. The ageing population leading to a rising cancer incidence, the fragmentation of cancers in genetic subgroups requiring smaller trials, the increased complexity in cancer research, the huge unmet needs by patients that suffer and die from cancer today: all this requires new approaches to tackling cancer. No party – industry, academic research, authorities – can make a significant change alone. The informed patient – and the engaged patient advocate – have a lot to contribute to that process. Patient advocacy has the power to bring all parties together to focus on real needs and work on solutions rather than singular approaches.
However, broader financial and societal support for patient advocates – and advocacy work like ours – would be needed to increase our capacities and outreach by building a professional organisation. Unfortunately, while the industry is very supportive, it is very difficult today to get sustainable funding from public sources for professional patient advocacy work to achieve an equal balance. We would really need a broader commitment of governments, the EU and institutions to fund “civil society engagement” which already has a major role in healthcare today – but is largely underresourced and undervalued.
For those patient advocates that speak English well enough and have some medical knowledge, medical conferences like EHA and ASH as well as online pages of medical journals are probably the most valuable information sources, especially since abstracts of research articles are published online. For information about approved prescription medicines, both the European Medicines Agency (EMA) website as well as US websites of pharma companies are helpful – even though the latter requires patients to confirm they are “US citizens” when entering those websites.
Clinicaltrials.gov is a valuable source on trials, but we hope with the long anticipated public launch of the European EudraCT database, we’ll have a much better source for clinical trials run in Europe soon. For CML patients, in many countries, online patient communities – like my blog in Germany, like diagnoza-cml.cz in Czech Republic, the Asian CML Yahoo forum in Singapore, nationalcmlsociety.org in the USA and many others of that kind, have become key sources of information for CML patients. Social Media services like Twitter are also becoming important channels to hear about news from medical conferences too – even though still only a small minority of cancer patients make use of Social Media beyond online forums and mailinglists today.