Back in August, we published a post about Kim Goodsell, an endurance athlete who took a DIY approach to getting to the bottom of her rapidly and mysteriously declining health. She wasn't getting answers from her own physicians, and so she began to conduct her own research which led to her sequencing her own genome, and discovering that she had two genetic diseases that threatened to end her career as an elite athlete. She published her findings in a white paper which she used to advocate for treatment for her diseases.
Extraordinary? Without a doubt. I still get chills thinking about her ordeal and its resolution. The fact of Ms. Goodsell solving her own medical mystery is amazing, but her approach -- undertaking serious research and publishing it -- may have been part of the underpinnings of an emerging chapter in patient-centered health care. In this chapter, patients are playing an active role in scientific publishing and peer review.
Kim Goodsell didn't publish her findings in a journal, but that she might have is not out of the question.
Science recently reported on a new endeavor from BioMed Central. In 2015, the open-access publisher of peer-reviewed journals will publish Research Involvement and Engagement. Editorial staff and reviewers that include both academics and patients will have equal weight in selecting papers for publication. The publisher describes the journal this way:
Research Involvement and Engagement is an interdisciplinary, health and social care journal focusing on patient and wider involvement and engagement in research, at all stages. The journal will have a novel structure, co-produced by all key stakeholders, including patients, academics, policy makers and service users. All articles within the journal will be reviewed by both academics and patients, with both reports carrying equal weight in the editorial decision.
The two editors in chief will be Sophie Staniszewska from Warwick Medical School, Warwick University (U.K.) and Richard Stephens, a well-known patient advocate in the U.K., who is, himself a multiple cancer survivor.
BioMed Central is taking a tremendous risk, that -- if it works -- could drastically change scientific publishing, not to mention research and funding. They are betting that people who are deeply engaged with finding cures for their illnesses are not just advocates, but experts in their own right.
Power to the patients, indeed!