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Why Purchasers Should Care about Participatory Medicine


Summary: Purchasers of health care—employers, union trusts, and government agencies—have experienced inexorable cost increases and stagnating quality results despite many efforts at payment and delivery system reform. Many employers embraced "consumerism" to encourage patients to recognize the wide variations in quality and cost and engage more directly in health and health care decisions. In recent years, they have introduced benefit designs and workplace programs and advocated for policy changes that would increase employee engagement in health care. Purchasers will be motivated and influential partners in the development of a multi-faceted strategy to advance participatory medicine.

Keywords: Participatory medicine.
Citation: Lansky D. Why purchasers should care about participatory medicine. J Participat Med. 2009(Oct);1(1):e6.
Published: October 21, 2009.
Competing Interests: The author has declared that no competing interests exist.

Those who purchase health care—employers, union trusts, and government agencies—have developed a pretty hard, even cynical edge when it comes to health system improvement. For twenty-five years, they have heard a variety of theories on how to achieve better outcomes, improve process quality, and assure the appropriate use of resources. Many purchasers have been caught up by one or more of the recent enthusiasms: continuous quality improvement, managed competition, pay-for-performance, consumer-directed health plans, and, more recently, medical homes and accountable care organizations. Despite all these efforts, what they have actually experienced is inexorable and unjustifiable cost increases and stagnating quality results.

Stuck with the daily task of managing medical inflation and its impact on the viability of business and government programs, purchasers keep looking for the trick that will reduce cost growth while improving quality. For them, current cost trends are unsupportable. Continued health care cost inflation is being expressed in coverage reductions, benefit design changes, increased cost sharing by employees, and depressed morale as employees see their benefits "taken away." Many large employers fear that increasingly expensive medical care will lead to poorer health, as some employees have started to skip some tests and treatments, and medication adherence remains problematic. 

What lessons do purchasers take from these 25 years of system improvement efforts and their increasing understanding of system drivers? First, that the supertanker of US health care will not be redirected with a few local pilot projects. Second, that providers, suppliers, and consumers respond most dramatically to changes in financial responsibility: manipulation of benefit design on the consumer side and payment systems on the provider side. Third, that the unique US culture of health and health care is powerfully resistant to systemic change, even when such proposals are based on good evidence and make good sense.

Consumerism and Participatory Medicine

So, in the spacious pantheon of good ideas that don't get much traction, where should we put "participatory medicine"? Certainly this approach has face validity among purchasers—particularly among employers and most particularly among those employers who experimented with "consumerism" (ie, greater cost-sharing) in the last decade or so. That subset of purchasers believed that too many employees—and here we are talking about people with good jobs, in relatively good health, with good, affordable insurance coverage—were blind to the costs of health care services and demanded more tests, brand name drugs, and elective services without regard to the cost burden such high utilization created for everyone. These employers share a core belief that health care costs will only be curtailed when individuals take responsibility for their own health and feel some personal financial pain when they consume discretionary health services. They view this strategy as both financial and cultural—and are alert to the opportunities to use communications tools and health care programs to change the mindset of employees and family members about health and health care.

This form of consumerism—individualistic and economic—fairly quickly runs up against much larger and less tractable forces. Medicare and commercial fee-for-service payment propels more medical service utilization, whether justified or not. Television dramas and advertising drive home the message of more testing, more diagnosis, and more treatment. Provider fragmentation leads to repeat tests, misdiagnosis, poor care coordination, and lack of accountability. No amount of consumer cost sharing will reduce the power of these supply-side forces. But one of the secondary effects of purchaser and payer cost-shifting may be more powerful than the intended one.

Economic consumerism has had the side-effect of altering cultural norms and expectations. The cruel translation of medical cost growth into benefit designs that put higher costs on the backs of working families has taught more Americans just how expensive and unjustified the costs of health care have become. And it has begun to raise questions about quality, safety, value, and net benefit. People are beginning to ask that each new test and procedure and drug recommendation be justified by evidence that it will make a difference for them—and this expectation is expressed to their doctor and, in turn, to the suppliers of drugs and devices, and, in turn, to Congress which has begun to support comparative effectiveness research and outcomes-based payment. Consumerism has stimulated a snowball effect, prompting a growing number of patients to demand a different model of decision-making and participation in care that is beginning to change the standard for professionals and institutions.

Purchasers, in other words, understand that participatory medicine is not just about helping an individual patient better understand how to manage their own health and make important health care decisions. Participatory medicine is also about creating a broad awareness that a health system that only rewards services, that is not based on evidence, that sanctions an unaccountable professional and managerial elite to dispense and withhold services—is not just, effective, or affordable.

Purchasers' Expectations of PM

So purchasers are receptive to the techniques that can be grouped under the heading of participatory medicine. They would hope to see several benefits if these techniques were adopted and proven to be effective.

They would hope to see measurable improvements in health: a healthier workforce and improved productivity among employees because they and their family members are healthier, more self-reliant, and using the doctor less.

They would expect cost savings: employees will select the physicians, hospitals, and other providers with the best track record of quality performance and positive outcomes while using resources appropriately. Employees will also be more knowledgeable about their own health and knowing when and how to use the health care system.

And they would look for system-wide improvements: health professionals who hear from their patients that the community values certain behaviors—evidence-based medical practices, shared decision-making, respect for patient values, sensitivity to cultural norms and preferences, and a readiness to explore innovative service models that better meet patient needs and improve health.

Purchasers' Implementation of PM

These are the outcomes purchasers would hope for from wide acceptance of participatory medicine. As employers, they are already helping to promote these ideas by helping individual employees, by altering the workplace environment, and by advocating for policy changes.

The most active employers support individuals in greater participation in their care in at least five ways. First, many ask their contracted health plans to offer employees "treatment decision support" services. Some plans provide such help through a contracted software vendor, others offer telephonic nurse support to help members work through difficult treatment decisions, and others provide second opinion services, particularly for complex and expensive treatments.

Second, many companies are exploring "value-based benefit designs," in which employees experience lower cost-sharing when they use evidence-based services. This can be as simple as choosing a generic over an equivalent branded medication or as elaborate as prompting a chronically ill patient to seek out an advanced medical home.

Third, employers are seeking various ways to help workers choose doctors and hospitals. They may rely upon their health plans' "tiered networks" in which quality ratings are used to identify high- or low-performing physicians and employees experience lower costs when they use the better doctors.

Fourth, purchasers are supporting employees in navigating the health system as a whole, including sophisticated tools for choosing a health insurance plan—some of which show and explain quality ratings as well as expected out of pocket costs for people with similar profiles.

Finally, many employers are implementing health risk appraisal systems, and tying incentives or penalties to their completion. They believe that they can conduct an early (and periodic) assessment of risk factors and offer employees various services—such as nutrition advice, walking clubs, smoking cessation programs—to help them manage and reduce those risks. Some employers use these data points as baseline health assessments and tie medical cost-sharing contributions to the employee's progress in making improvements against the baseline.

A second level of purchaser support for participatory medicine takes place at the worksite itself. Large companies with geographically concentrated workforces are establishing on-site health services, ranging from fitness centers to fully staffed primary care clinics. These often integrate holistic wellness programs with medical care and, increasingly, telemedicine services to support remote patient access and remote consultations. Some employers are launching "benefits blogs" and other social network tools to enable workers to interact with each other about medical and benefits issues. In cases where the benefit design has been adjusted to encourage some behaviors—such as staying on chronic care medications like statins—the company uses these programs to communicate broader messages about evidence-based medicine and personal responsibility.

Finally, employers are trying to shape current health policy reforms to facilitate greater patient participation in medical care. Two important examples are purchaser advocacy for greater transparency, exemplified in the Stand for Quality alliance (, and general support for IT incentive strategies that lead to greater access to and use of reliable personal health information by patients and consumers. For example, regional employer coalitions are supporting legislation that would create a Medicare incentive for use of shared decision-making tools (S.1133 - "Empowering Medicare Patient Choices Act") and another bill that would pay doctors a fee for every patient who uses a personal health record. Purchasers and consumer advocates also insisted that "patient engagement" be among the criteria that doctors and hospitals must satisfy in order to receive the new federal incentive payments for adopting health information technology.

Employers have adopted all of these strategies—employee-services, worksite, and policy advocacy—on their own, not as part of a larger movement and certainly not under the banner of participatory medicine. But the opportunity is here to bring these efforts under a common rubric and align them with other complementary activities.

How Can Purchasers Show Their Commitment to PM?

First, purchasers need to put money behind their expressed belief in patient participation. They have the power to pay for some services and not pay for others. For instance, payment systems can reward both the physician and patient for using shared decision-making tools prior to major procedures—or can impose financial penalties when patients are not given an opportunity to participate. Conversely, if purchasers continue to reward service volumes, few physicians will develop the skills or offer the tools to increase patient engagement.

Second, purchasers need to advocate for comparative effectiveness research, the application of behavioral economics, personal health records, and other "inputs" to participatory medicine. Unless the prevailing payment system changes significantly, few health systems or health industry sectors will be motivated to invest in the underlying infrastructure of patient participation.

Third, they need to communicate to their employees and to the providers who serve them. Purchasers need to emphasize the central importance of transparency to policymakers and providers. Without information about quality, variation, and performance, it will remain difficult to engage patients. With such information in hand, purchasers and payers will be able to offer valuable tools to patients as they face important health decisions.

What Will Purchasers Look for From This Journal to Help Us Move Forward?

Who needs to "participate" in medical care? Certainly, purchasers would like to see patients, families, and clinicians discover new ways of sharing expertise and perspective. But the United States has never been very successful at providing and managing health services that balance the needs and values of each individual with those of society as a whole. The time has come to understand that government agencies, employers, unions, consumer organizations, and even insurance plans represent the interests of society as a whole. These organizations are able to look at aggregate resources and investments, and develop policies that embody the national interest.

Participatory medicine is not only about encouraging patients and doctors to collaborate better, it is also about letting society be a party to the conversation in each examining room. We will need to devise new and better mechanisms for hearing society's voice, but for now the Journal of Participatory Medicine can be one place where everyone can contribute to the discussion.

Open Questions

  1. How will participatory medicine reconcile the paternalism of employer-sponsored health care and group insurance with the autonomy and engagement of individuals? Is it a good idea for employers or health plans to reward some behaviors, services, or providers with favorable payment or recognition?
  2. Both cultural and economic forces tend to favor "more" health care, but purchasers are arguing for "right" care. How will participatory medicine "bend the curve" of current medical care cost trends?
Copyright: © 2009 David Lansky. 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.

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