Citation: Frost J. “Innovations in Participatory Medicine:” A Call for Submissions. J Participat Med. 2010 Sep 13; 2:e6.
Published: September 13, 2010.
Competing Interests: The author has declared that no competing interests exist.
We are pleased to announce the launch of a new section within the Journal of Participatory Medicine, “Innovations in Participatory Medicine: Tracing the History and Anticipating the Future.”
Technology is both a cause and effect of participatory medicine. Thanks to the advent of social media and sensor technology, as well as advances in genetic testing, patients and their advocates are better able to capture and record health data, organize themselves, and share knowledge. At the same time, a diverse set of people including patients, caregivers, researchers, and entrepreneurs, are developing new technologies to meet current health-related needs. The section is open to any contributions on the topic of innovations that support shared decision making and participatory medicine, but aims to publish two types of contribution in particular. The first type includes articles that document historical cases, describing the development of an innovation that advanced what we now consider participatory medicine. The second type includes case studies of early to mid-stage innovations that support participatory medicine and may change the way we approach our well-being and health care.
Historical Essays: Although the label “participatory medicine” may be new, many technologies have been developed to help patients participate in their care and improve well-being. In this section, we will publish submissions that look at the development and dissemination of these innovations and examine how patients, patient advocates, and medical professionals have forced change in treatment practices through either the development or use of new technology.
In submissions focused on historical examples, authors are invited to write a case describing a problem in health care, how it was addressed through a particular innovation, the barriers to the development and dissemination of the innovation, and the ways in which the work affected patient engagement and participation. Case studies drawn from a range of disciplines could include: developments in self-diagnostic technologies such as pregnancy tests or home HIV testing; informing parents of the sex of unborn babies through ultrasounds; early genetics testing around Alzheimer’s, Huntington’s and other serious conditions; examples of patients sharing data and knowledge through online communities; or “citizen science” in which patients organize, sponsor and participate in research efforts.
Our first contribution, for instance, will document how diabetes self-monitoring became integral to diabetes care. Though difficult to imagine now, early blood glucose meters were only intended for health care providers for the purpose of diabetes screening. Manufacturers concerned about lawsuits mandated that providers oversee their use. Patients living with the condition were told that blood sugar levels could not be controlled to any degree of precision. It was only after one particularly motivated patient, Dick Bernstein, had the idea that he could improve his glucose levels by monitoring himself over the course of the day, that patients gained access to blood glucose monitoring technologies. Bernstein circumvented restrictions to obtain his own glucose monitor and later played an instrumental role in developing self-monitoring technologies appropriate for use by patients. Though resisted at the time by many providers and manufacturers, his efforts helped drive the evolution in technology and led to broad social changes in the care of people with type I diabetes. This example, combining technology and activism in an important historical case, shows how empowering patients can lead to important changes in health care with broad social ramifications.
Design Case Studies: The second type of contribution presents contemporary issues in the design and distribution of technologies in participatory medicine. The editors invite contributions from the front lines of participatory medicine, including researchers, patients, and entrepreneurs. The authors should describe the problem identified, the basic design, barriers to development and distribution, and anticipated effect of the innovation. In short design case studies, innovators and patients should describe their efforts to create and co-opt technologies and what they have learned during in that process. By publishing these cases online, we hope that authors will be able to receive feedback and advice on early stage projects, promoting online conversation and providing a meeting place for potential collaborators.
Advances in technology over the past decade provide numerous examples. 23andMe and other organizations have made genetic testing widely available. In the area of self-monitoring, systems for activity, biometrics, and behavioral sensing have been brought to market, as have diagnostic and prognostic testing technologies. Social media, including online and data sharing platforms like mydaughtersDNA and PatientsLikeMe, blogs, Twitter, and other patient-generated content, have revolutionized how patients share knowledge. Electronic Medical Records (EMR) and Personal Health Records (PHR) promise major advances in information management and care, but pose important questions around privacy and the sharing of medical data.
These are exciting times in participatory medicine. Efforts in technology and participatory medicine may be at an all-time peak. People living with health conditions and caring for patients use existing technology to solve day-to-day problems and people with varied perspectives are developing novel solutions to address these needs. Through these processes, patients and innovators are changing the practice of medicine.
Authors are invited to submit either historical or contemporary case studies that respond to the discussion questions listed in the JoPM Author Guidelines.
Copyright: © 2010 Jeana H. Frost. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.