Patients need to be involved in evidence-based decision making, says report


It is vital to engage patients in the process of making healthcare decisions on the basis of evidence, according to a new report.

The article, The Ethical Imperative and Moral Challenge of Engaging Patients and the Public with Evidence, published in the April edition of Health Affairs, is written by scholars from c a research institution dedicated to bioethics.

They offer five ethical reasons for there to be transparent public dialogue about evidence: to respect persons and provide for meaningful informed consent, to achieve better health outcomes, to support effective stewardship of public resources, to enhance the just distribution of the benefits gained from healthcare and health research, and to build public trust.

But accepting the ethical reasons for patient and public engagement with evidence "is only the first step," the authors write. "The moral landscape is far more complicated. Public engagement with evidence may fail to be an important route to sound public policy unless those complexities are anticipated and managed."

They outline value conflicts likely to emerge in five settings: clinical care, healthcare organizations, public health, regulation, and among payers.
In clinical care, for example, along with evidence about effectiveness and risk, treatment choice is, and should be, influenced by a patient's values and preferences, including which benefits are deemed worthy of the potential risks.

The article proposes strategies for managing values conflicts in each of the five settings and concludes with three cross-cutting recommendations for navigating moral challenges that can arise from patient and public engagement with evidence.

The first of these is to advance community-based participatory research. With this kind of research, patients, family members, and community representatives would help identify worthy research and work with investigators in collecting, analyzing, and interpreting findings. "This is an ideal way to engage the public, helps ensure that research meets community priorities, and builds trustworthy research that communities can believe in," they write.

Secondly, they recommend facilitating patient and community involvement in the governance of learning health systems. Learning health systems collect data at the point of care to learn how to improve the value of their services. Patient and community involvement could include "decisions about which issues should be studied, what kind of oversight is needed, and how soon to put findings into practice."

Finally, they recommend gathering and use evidence about cost as well as quality. The authors acknowledge that there is little support for considering costs in reimbursement decisions. "Indeed, the strong focus on a patient-centered ethic often obscures the consequences of spending money on high cost technologies that may not provide high value," they write.

One way they suggest to get public buy-in for the importance of considering costs is to involve patients and the public in technology assessment activities, including considering the impact of adopting unproven or marginally beneficial technologies on community resources and community wellbeing.

The Hastings Center, Healthcare, US