Going from researching patients to patients researchers?

Sara Riggare sara@riggare.se
Susannah Fox sfoxdc@gmail.com
Michael Seres mseres@michaelseres.com
Elizabeth Pollard eli@worldpdcoalition.org

Abstract

All over the world, patients’ voices are being heard more and more in healthcare and are increasingly seen as an important stakeholder in discussions on healthcare design and delivery. But what about medical research? Can patients add value beyond being research subjects? 

In this panel we will discuss how patients’ opinions, knowledge, and experiences can make the whole research process better; from formulating the research questions, to designing, recruiting, and implementing the research as well as disseminating the research results. We will draw from our experience of different initiatives, like PCORI and NIHR. Members of the panel are:

Michael Seres is a long term patient having become the 11th person in the UK to undergo a rare bowel transplant and now coping with high grade B cell Lymphoma. Michael is an active participant in digital health having developed and implemented the first skype clinics and he is now on the NHS England User Council for Digital Services. He is also founder of 11Health where he created the first ever sensor technology for ostomy patients.

Tessa Richards is senior editor/patient partnership at the British Medical Journal (BMJ) and responsible for the strategy that the BMJ launched in June 2014 to promote patient partnership. As a result of the strategy, the BMJ have embedded patient peer review of research papers and are also calling for the submission of robust research papers that advance the science, art, implementation, and assessment of the impact of patient partnership, shared decision making, and patient centred care. 

Elizabeth (“Eli”) Pollard is the Executive director of the World Parkinson Coalition Inc., organizer of the only scientific congress in Parkinson actively engaging patients throughout the planning of the conference. Eli knows all there is to know about balancing the needs and wishes of for example stem cell researchers with those of patients with Parkinson in order to create a very inclusive conference.

Sara Riggare is a PhD student at Karolinska Institutet living with Parkinson and developing tools for self-tracking for Parkinson and other chronic conditions. Sara has experience from participating in projects and initiatives, both in Sweden, UK, and US, attempting to move beyond including patients in research only as participants and knows a lot about the obstacles that can be encountered.

Susannah Fox will moderate the discussion. Currently the Entrepreneur in Residence at the Robert Wood Johnson Foundation, Susannah spent 14 years at the Pew Research Center tracking the changes happening at the intersection of health and technology. She will provide perspective as an e-patient historian and trend spotter who believes in the power of peer connection.


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