Patients as Influencers and Promoters of Biomedical Research

Much innovation is happening in patients’ contribution to research. The collective force of information technology-enabled patient communities drives this innovation. Such communities can propose research questions and participate in determining biomedical research priorities. As seen in the section on patient conferences, patient advocacy organizations see influencing decisions about research priorities and funding as one of their key functions. IPFCC-run PFACS, along with their other functions, provide platforms for clinicians or researchers to generate ideas and obtain members’ input and feedback. In addition, online patient communities like PatientsLikeMe, where patients contribute their data to repositories, can demand a voice in how their data are used in research. As participatory medicine is becoming the norm, invitations to patients to contribute to defining research agendas may come from unusual places. For example, 23andMe, a direct-to-consumer commercial genetic testing service company, encourages its customers, who are not necessarily patients, to propose new research questions and submit project ideas (Prainsack, 2014). While a single individual is not likely to impact the research agenda of a biomedical field, unless she or he is a celebrity, vocal engaged communities can affect science policy and funding.

PatientsLikeMe and 23andMe community members participate in a large number of studies, organized by these companies with collaboration from industry and academic researchers. Participants generally feel comfortable sharing their data via these platforms (Wicks et al., 2010), as they are able to contribute to the discourse about research priorities. Much of the research conducted with PatientsLikeMe participants consists of observational studies that help researchers understand how diseases progress and affect participants. These data have been used to inform improving questionnaires for assessing patients’ functioning (e.g., in ALS patients) (Swan, 2012). Another significant research area is tracking patients’ response to off-label use of treatments. Off-label use, both legal and common, occurs when a medication is prescribed for diagnoses or in doses different from those defined in its FDA approval (Food and Drug Administration, 2018). For example, a drug that causes an undesirable side effect (e.g., jitters and insomnia) may be used for a disease where that side effect would be welcome (e.g., MS-induced fatigue). Wicks points out that prescribing physicians often do not treat enough patients with the condition to assess the effectiveness of such off-label use and describes several cases when PatientsLikeMe provided positive data that encouraged further investigation in traditional research.

Engaged patients can also help the research community with promoting studies and recruiting participants into them - a practice called crowdsourced recruitment - as well as promoting the importance of research in general. For example, Kantor et al. (2018) point out that patient community websites, such as Multiple Sclerosis support community, promote information about clinical trials. Organizations and companies like PatientsLikeMe and 23andMe use their extensive networks to recruit participants for researcher-organized studies (Swan, 2012).

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