AMA Journal of Ethics®

Illuminating the art of medicine

Journal of Ethics Header

AMA Journal of Ethics®

Illuminating the art of medicine

Virtual Mentor. June 2004, Volume 6, Number 6.

Medicine and Society

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New Roles for Patients and Consumers in Assuring High Quality Care

Informed patients can take an active role in improving the quality of health care.

Judith H. Hibbard, PhD

Current health policy aims to strengthen the role of consumers and patients in health care. Our ability to improve the quality of care—and to control costs—will require an effective partnership with informed and engaged consumers. Here, I am using the term consumer to include both patients (those currently using health care) and potential patients (those who are making choices prior to using health care services).

Consumers can play a number of roles in health care to improve quality and reduce costs. First, consumers can be informed choosers of care. Higher quality health care will be within the reach of consumers who learn to use comparative performance data to select high-performing providers, hospitals, nursing homes, and health plans for themselves and their family members [1]. Further, such consumers actually motivate providers to improve their performance. Public performance reports, particularly those that highlight high and low performers, push hospitals to improve [2]. This creates a virtuous cycle: by choosing high-performing providers and selecting cost-effective evidence-based treatment options, patients can obtain higher quality care for themselves and stimulate quality improvement among the institutions and providers in their health care market.

Second, when patients partner with their providers and take on a significant role in maintaining their health, they are in essence helping to "produce" health. By engaging in effective self-care, taking preventive actions, and collaborating with providers to define and implement care plans, patients can be coproducers of health [3-5]. They need not medicalize their lives, they only need to think and act wisely on health matters. In addition, when patients are engaged in their care, they can play an important role in their own safety by being vigilant partners, assuring that health care providers have correct information about their medical history and care plans.

Third, patients can be evaluators of care when they are the source of data on provider and system performance and when they participate in defining the parameters of quality. Patients' assessments of care can then be fed back to providers and thus be the basis for quality improvement.

Thus, when patients take on the informed choice role, the coproducer role, and the evaluator role, they are likely to get better care for themselves and also contribute to mechanisms that improve the quality of care for everyone [6].

As the population ages and the number of chronically ill people increases, physicians ought to encourage patient engagement in informed choices, and they must support the patient role in the care process. Informed and activated patients represent a tremendous untapped resource within the health care arena. It is a resource we can no longer afford to leave untapped.

Physicians can do much to support patients and consumers in these three roles. Overall, physicians can provide information to enable consumers to participate more fully, give reinforcement and sanctioning for taking on these roles, diagnose patient capabilities for self-management, and help them increase their skills and knowledge. Finally, physicians can model key behaviors for patients.

Physician Support for Informed Choice and the Evaluator Role

By arming patients with evidence about treatment risks and benefits and drawing them into decision processes, physicians can make treatment choices that are more likely to reflect patient values and concerns. By sharing evidence about treatment risks and benefits, physicians are also modeling good health care choices for their patients. Moreover, when physicians use comparative performance data to make referrals to hospitals, nursing homes, and specialists, they are not only taking steps to ensure their patients get high quality care, they are also modeling how these choices can be made and sanctioning the use of comparative performance data for guiding these selections. Similarly, when physicians react positively to patients who bring comparative performance data into the discussion of referrals, they also sanction such patients in their health consumer roles. Finally, by including patients in the process of defining what high quality care entails, and using the information gained from patient assessments of care as the basis for improvement, physicians acknowledge the legitimacy and the importance of patients' perspectives in care.

Physician Support for the Coproducer Role

Current practices in health care often send the implicit message to patients that they are not important actors in the care process and that their proper role is one of passivity and dependence. It will take much to change that aspect of health care culture. First in importance is for physicians to recognize that high quality care must include the support and encouragement of patients in their self-management and collaborator roles. Yet doing so represents a major departure for most clinicians who do not see this as their job. Further, many physicians feel that they have no particular skill in supporting and encouraging patient self-management.

Yet, for patients to be effective team members they need a certain level of knowledge, skill, and confidence. Just like the other "vital signs" taken of the patient, the patient's health literacy level is something that clinicians need to assess. This assessment is possible with survey instruments such as the Patient Activation Measure (PAM), which measures patient knowledge, skill, and confidence for self-management for patients with chronic illness [7]. Activation, as measured by the PAM, appears to be developmental in nature with four stages: In the first stage patients come to understand that they have an important role to play in maintaining their own health. The second stage involves gaining the confidence and knowledge necessary to take action, including knowledge of medications and necessary lifestyle changes, confidence in talking to health care providers and knowing when to seek help. The third stage involves actually taking action, including maintaining lifestyle changes, and handling symptoms on one's own. In the fourth stage patients are able to stay the course even when they are under stress.

Using the PAM, a clinician can tailor a care plan to a particular patient's needs. At each visit the physician can assess activation levels, measuring how well a care plan is working. It probably would be valuable for patients to know that their physician is actively supporting them and is tracking their progress in self-management. The PAM can also determine whether individual patients or whole patient populations are gaining in knowledge, skills, and confidence over time. If we believe that high quality care should result in increased patient capability for self-management over time, then this measure could also be used as an indicator of high quality chronic disease care where patient activation gains are observed over time. Patients likely would welcome data that compared physicians, rating them on how well they support patients in their self-management role. Similarly, patient feedback about this data could form the basis for changes in physician practice.

It is becoming clear that patients must be part of any meaningful solution to the challenges facing health care. Having more knowledgeable, engaged patients making informed decisions about their care and managing their health would improve both the quality of care and health outcomes. Encouragement and support from physicians for patients adopting these roles will be pivotal in making this a reality.



References

  1. Marshall MN, Shekelle PG, Leatherman S, Brook RH. The public release of performance data: what do we expect to gain? A review of the evidence. JAMA. 2000;283:1866-1874.
  2. Hibbard JH, Stockard J, Tusler M. Does publicizing hospital performance stimulate quality improvement efforts? Health Aff. 2003;22:84-94.
  3. Kaplan SH, Greenfield S, Ware JE Jr. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care. 1989;27:S110-S127
  4. Lorig K. Chronic disease self-management: A model for tertiary prevention. Am Behav Sci.1996;39:676-683.
  5. Von Korff M, Moore JE, Lorig K, et al. A randomized trial of a lay person-led self-management group intervention for back pain patients in primary care. Spine.1998;23:2608-2615.
  6. Hibbard JH. Engaging health care consumers to improve the quality of care. Med Care. 2003;41(Supp I):61-70.
  7. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. August 2004. In Press.

Judith H. Hibbard, DrPH, is a professor at University of Oregon, Eugene, in the Department of Planning, Public Policy, and Management.

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