Third Assignment for Medicine and the Arts (FutureLearn MOOC in association with the University of Cape Town)

Patients for Clinical Research: “Patients Included”

While I’ve been involved in a number of Kickstarter and other crowdfunding drives, mostly related to writing and publishing projects, I was not previously familiar with Medstartr. Browsing the site, I found a wide range of fascinating innovations, but the one that particularly appealed to me was “Patients Included”: a drive to fund grants enabling ‘patient experts’ to attend medical conferences.

Innovations start as ideas, often generated during conversations between medical professionals or between medical professionals and their patients. Having attended a range of conferences in various disciplines, I am well aware that inspiration can strike more readily when different groups are mingling and talking about a wide range of subjects loosely related to the topic of the conference or to a particular lecture, presentation or display. However, attending conferences can be costly, particularly when the main event dealing with a particular subject area is held far from where attendees live. While healthcare professionals are generally funded by their institutions to attend conferences as part of their ongoing continuing professional development, patients and other interested laypeople have to find the funding for conference fees, travel and accommodation themselves.

Patients for Clinical Research believe that innovation in disease management and treatment has to include patients, as well as researchers and healthcare professionals, in all stages of the process, and that patients’ voices need to be heard in the planning and reporting of new research. Patients have already collaborated with doctors and researchers to present posters at conferences that relate patient experiences to disease progression and treatment, and it is important that more patient voices are heard by those who are going to be treating them, or who are going to be leading research into their conditions.

Patients for Clinical Research aim to give that voice to as many representatives as possible, not just as presenters of innovation and research, but also as listeners in lectures who will then have the opportunity to question medical innovators and healthcare professionals at the forefronts of their fields, in order to make a real difference for others who have been and who will in the future be diagnosed with the same condition.

Patients for Clinical Research have pages on LinkedIn and Facebook. However, the link to their website is not presently operational, and it may be that this project is currently dormant. I hope that in the future this project may be resurrected or similar projects initiated in order to better fuel innovation that comes from patients and healthcare professionals working in partnership.

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