Abstract

Summary: The job of the Journal of Participatory Medicine is to answer the question of “why participatory medicine?” It is our hypothesis that PM is good: it will lead to healthier, more empowered individuals, lower health care costs (through reduced need for health care), and a more productive, happier society overall. But that’s just a hypothesis, and one we want to test rather than assert. To test it, we need both to cover news of the field and encourage researchers and individuals to try things out and report on their efforts. So yes, we’re a cheerleader and optimist…but in the end we must be a skeptical if loving critic.

Keywords: Participatory medicine, user-generated data, self-quantifiers.

Citation: Dyson E. Why participatory medicine? J Participat Med. 2009(Oct):1(1):e1.

Published: October 21, 2009.

Competing Interests:The author has declared that no competing interests exist but has several aligned ones that deserve disclosure. These include investments in 23andMe, PatientsLikeMe, HealthWorldWeb, Voxiva, Organized Wisdom, ReliefInsite, Polka.com (intended), and Keas.

In the business and technology world, you can read about the exciting ways that individuals are using the Internet and computers to manage their own health. The “self-quantifiers” are monitoring their own stats and behavior: two consumer sleep monitors—a wristband and a headband—have been launched in the last couple of months. But so far, these pioneers are outliers; most people are too busy with “real life” to spend their time exploring the inner mysteries of their own bodies. They have bills to pay, kids to watch, jobs to do, and perhaps even illnesses to deal with. All of which keeps them from making the investments in understanding and caring for their own bodies that might enable them to feel better and find the energy…if they only knew.

Likewise, the emerging field of PM is not devoted to the activities of an elite few. It is also about finding, defining, and fostering participation in healthy behavior and health care across a much broader swath of society—the large majority of people who are neither narcissistic nor acutely ill, but who could be healthier or less sick if it were simpler to care for themselves. They will need tools, information, support, and confidence to do this well. We want to encourage not just the short-lived enthusiasm of a campaign, but an enduring, widespread change in how people can ensure their own health and participate in their own care.

To do so, we plan to reach out to the thousands of researchers, developers, and businesspeople already building and studying the tools for PM. They need to know about one another’s activities and about the reactions and behavior of real consumers. Our goal is to foster an active, transparent market, with vendors and inventors competing with one another to improve their products and services and ideas, and vying to gain favor and adoption from the public.

Whatever your role in this nascent marketplace, we welcome you and we appreciate your participation in this joint mission.

Thinking Back

To put our vision in perspective, consider how health and health care have changed over the past two centuries.

In the distant past, people took care of themselves and their families. When they got sick, they were probably more likely to consult a priest, rabbi, or imam than a doctor. Only the rich had doctors, and those doctors didn’t know very much; there wasn’t much to know until recently. But the doctor knew more than his patients, and he had authority.

In the recent past, doctors had special knowledge, and they also had the time to develop relationships with their patients over time. That was the golden age of doctor-driven health care.

But now, the amount of medical knowledge is beyond the reach of any one person—and the potential amount of information about each individual has dramatically increased as well. With tools and software, it’s possible to collect huge amounts of information about each individual; and often, those best suited to figure out which information is most important and respond to it are the patients themselves. Thus, because clinicians are overwhelmed and because people now have access to information not available before, a huge amount of responsibility is devolving to individuals. Increasingly, to know the correct diagnosis or the best treatment or lifestyle options, it’s up to individuals to collect their own data, exercise judgment about it, and use it to guide their decisions and actions. They can make use of tools to help them do so and can consult with their clinicians for additional guidance and care.

Not all individuals are up to the challenge, and many don’t even recognize it as their responsibility. What of those who elect not to participate or are unable to do so? Do they lose their rights to care—whatever those rights are—when they get sick? Do they have to pay more for care if they contributed to their own ill health, even if by omission (that missed colonoscopy!), let alone by commission (smoking, drinking, and overeating)? From the point of view of individual freedom, controlling other people’s behavior is heresy. From the point of view of people who have to pay for others’ health care, some think it’s only reasonable.

The challenge is that now we know more. And that knowledge forces choices and responsibility upon us. Life is more complicated. Most people manage to pay their taxes; can they manage to learn about their own health and how to maintain it?

Probably. But how to make that happen? Here are some of the principal requirements for the coming-of-age of the e-patient: we need evidence to prove whether and how PM improves health and lowers costs; education to spread the word; exhortation to persuade people to act; enabling efforts to ensure that health care supports individuals’ involvement; emolument to persuade institutions as well as individuals; and occasionally edicts, or laws and policy when enticements fail.

Let’s consider these principal requirements.

Evidence

Right now, there is some evidence that when individuals are more active in promoting their own health and are more involved in their own care, they do better and spend less on health care. We need stronger evidence detailing how this works, as well as evidence of effective technologies, programs, and policies to guide efforts to increase people’s effective engagement in their own care. We know from the vast literatures of tobacco use and physical activity, for example, that individual behavior changes when the context changes, when social norms change.

Pulling together existing evidence from the fields of behavioral medicine, health communications, health services research, health education, primary care, nursing, health psychology, among others, as well as inviting current and future research, will provide direction (see Kibbe & Kvedar article on building a research agenda for PM in this issue).

The challenge is that we’re talking not about something you can test only in a lab or a randomized controlled trial. That work is needed, but practical, on-the-ground studies are needed as well. New York City has bravely mandated nutritional information in restaurant menus. Will it have an impact? Compared to what? The more such stories we can explore, the better.

One promising study will be run for the Health Care X Prize, a two-stage competition currently under design that’s aimed at discovering what interventions can actually improve the health of a community at the same or reduced cost. It will comprise a preparation cycle during which teams will compete on the basis of models of their proposals and their impact on a reference community of 10,000 people. Five of these teams will win the chance to apply their ideas in five real populations of 10,000 people each, working with an existing payer-provider group to implement them. It’s not clear what interventions will be included, but it’s fairly certain that a few of them will involve substantial user participation. (The author is a judge for this effort.)

So, here you have it—a call to inspired scientists, and clinician researchers, data collectors, and data analysts: help us understand the evidence that is already out there, but hidden under the virtual mattresses of paper files, incompatible formats, incomplete records, impenetrable bureaucracies.

Let’s build participatory medicine on the best of what we know and our best bet on what new knowledge will make a difference in each of the following domains.

Education

One aspect of education happens in schools. What’s the proper curriculum for schoolchildren about healthy living? How can we teach kids that it’s normal and expected that they maintain their own health records, check out a new doctor’s performance, and research their treatment choices much as they manage other parts of their lives? These questions bear examining and we hope to become a resource whenever people need to find the answers.

Once we have some data on the full range of questions, we need to spread it. JoPM, we hope, will serve the medical community, both practitioners and students. We want to inform the curricula of medical schools to help train a new generation of providers to observe, study, devise, and enact the best practices in PM. But we need to reach beyond that—not just to Jane Brody at The New York Times, but also to Nancy Snyderman on NBC, the editors of lifestyle sites, and even businesses who will be quick to grasp an opportunity once they see one.

We hope our existence will encourage research by reaching those who will make use of it in their own lives as they work with patients, seek care, or plan new studies.

Exhortation

What will it take to persuade people to take part in their own health and health care? Is it information, encouragement, incentives, or some combination? The threat of illness and poor health? Advocacy by media stars, community leaders, or active fellow patients? Proven cost savings? How much does PM depend on role models and encouragement from others? Which are effective and for whom through which media?

We need to know the answers to these questions. Legitimizing PM requires empirical studies and narratives and reflections on these topics. However, we can exhort all we want, but if people can’t figure out how to take action, they won’t. What will enable them to act?

Enabling Efforts

First and foremost, people will need a health care system that supports and values the efforts of each individual to take on these new responsibilities to the extent he or she is able. Right now we have a small group of savvy patient-consumers who are willing to tough it out with clinicians often hostile to their efforts and institutions that unintentionally erect barriers to them, as well as software tools that are cryptic and complex. While these hardy souls are leading the charge, the population at large will not follow them as long as the road is so rough and the resources required so extensive. But the policies, programs, services, and tools claiming to provide this support should also bear the scrutiny of formal evaluation.

What policies seem to work? Eliminating copayment for certain medications and screening tests is a good example of a policy that has undergone systematic examination, was found effective in increasing participation, and has begun to find its way into use. Will policies governing the popular patient-centered “medical home” (enriched primary care) actually make a difference in clinicians’ behaviors relative to patients—and to patients’ behaviors relative to their health and health care? Examining how current and future policies at the practice, clinic, hospital, health plan, and community level support and obstruct people’s participation in their care will help shape the environment to remove barriers.

In order for people to participate actively in their care, they must be able to communicate with their clinicians—not just their doctors, but a care team—in ways that are new to many health professionals and many patients. What training helps clinicians do this effectively? What institutional arrangements—group visits, for example—give patients the opportunity to learn and ask questions? And do they work: are people more likely to participate in their health after receiving such care?

For participatory medicine to flourish, consumers will also need tools and services to find and manage their own information. These will include everything from pedometers and monitoring devices, to easy-to-use software that will enable them to record their data, analyze it, and compare it with that of others. Many companies are jumping into this market; they will need to make sure their software interoperates with other tools and services on the market. We hope that JoPM will help the best to emerge and others to improve, and will highlight evidence on which ones make a difference to individuals.

Emolument

Money is one of the best indicators of value—when it is applied properly to persuade institutions as well as individuals to do the right thing. The flow of money in health and health care right now is often counterproductive. Hospitals lose money by doing the right thing and keeping patients healthy; doctors make money by ordering unnecessary tests and inconveniencing patients by bringing them in for unnecessary visits; patients don’t bear the financial costs of their own careless or self-destructive behavior.

This journal will publish work that describes and evaluates efforts to realign incentives that encourage participation.

Edicts

Edicts can work when enticements fail.

Despite the fierce debate currently raging about health care, little of this debate and the analyses that fuel it look directly at the impact of the proposed policies on participation—or the potential of other policies such as New York’s restaurant menu laws. How do the various laws and regulations encourage or discourage, support or bar individuals from participating fully in their health and care? And what are the effects of these policies on clinicians and institutions who must change to become responsive to them? Federal, local, and state governments may play a limited role in the specific experience of an individual patient. But the policies and regulations they enforce should support all citizens in their efforts to maintain their health and manage their care.

Conclusion: Critical Love

To loving critics: above all, while we espouse the ideal of participatory medicine, not everything that is called “participatory medicine” will be worthy of the name. So our focus will be on looking for effective, practical examples of what works, described in a way that makes it clear how it works, that it works, and the costs and benefits of its application.

We are just at the beginning, not of a brave new experiment that could end in disaster, but of multiple experiments, by thousands and ultimately millions of people, with variations in every parameter imaginable.

We will apply fierce tests to the research we report on: not every attempt is worthwhile; not every result is real or relevant to more than a small select group. We want to foster the best of participation, and to do so we need to call out efforts that are poorly planned, bogus, or simply ineffective. We will probably learn much more from our mistakes than from our successes. So it’s our job to call attention to efforts that fall short and to understand how they could be remedied.

We aim not to punish failure but to learn from it. We expect over time to find more and more successes as the failed efforts lose traction and inform future success. Over time, the diversity of attempts and the ingenuity and energy of individuals should lead to a world where health is more common and health care less necessary.

Copyright: © 2009 Esther Dyson. 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.