2:05 - 2:50 pmSunday, September 27
Plenary Hall
Going from researching patients to patients researchers?
Plenary Hall
Going from researching patients to patients researchers?
CTO, U.S. Dept of Health & Human Services
World Parkinson Coalition
11 Health
ePatient Scholar
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... Read more

Description

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.

 

Elizabeth "Eli" Pollard has been with the World Parkinson Coalition from its inception in 2004 and helped steer the organization, alongside world renowned Parkinsonologist and WPC founder, Dr. Stanley Fahn. Together they worked to grow WPC Inc. from its sole purpose, of hosting a triennial global Congress on Parkinson's disease, to its more meaningful place in the community today, as a hub for many of the global PD organizations to connect and intersect online, on teleconferences, or in person at the Congresses. Eli is thrilled with the opportunity to meet the members of the community, to help build the WPC Legacy, and to watch as leading researchers, clinicians, people with Parkinson's and others work together to bring us closer to finding the cause(s) of Parkinson's and a cure for the disease. Eli graduated from Michigan State University with a Bachelor's degree, and the School for International Training with a Master's degree in International & Intercultural Management. She spent most of her 20s living outside the US in Zimbabwe, Switzerland, and Japan with lengthy stays for research or travel in India, China, and Thailand. She lives in Brooklyn, New York with her husband and two rambunctious children who keep her on her toes when she's not knee deep in WPC work.

I was diagnosed aged 12 with the incurable bowel condition Crohn's Disease. In late 2011 I became the 11th person to undergo a small bowel transplant in the UK at The Churchill Hospital in Oxford. I started blogging about his journey through Bowel Transplant and my blog "beingapatient" has over 95,000 followers. I use social media to develop global on line peer to peer communities covering over 20,000 patients. I am also privileged to develop social media strategies around patient engagement. My passion is mentoring patients and their families and I am a published author & professional speaker. I have become the patient lead for #NHSSM, a facilitator for Centre for Patient Leadership & digital strategy advisor to The Oxford Transplant Foundation where I helped implement the first skype clinics. I am also founder of health tech start up 11Health.

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