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Three medical experts discussed the ethics of public engagement in health care policy decision-making at the Harvard Clinical Ethics Consortium last Friday.
The panel of speakers, which was hosted by Harvard Medical School’s Center for Bioethics, featured Erika Blacksher, a research professor at the University of Kansas; Julius J. Yang, a medical director at the Beth Israel Deaconess Medical Center; and Basel M. Tarab, an administrator at Winchester Hospital.
Moderating the discussion were Charlotte H. Harrison, an ethicist at Boston Children’s Hospital, as well as Jonathan M. Marron and Leanne J. Homan, the HMS Center for Bioethics’ director and associate director of clinical ethics, respectively.
This discussion grappled with the extent to which the public should be involved in medical policymaking, particularly when those policies concern patient care, and under what circumstances public engagement on these issues should be allowed.
Blacksher argued that the public should be invited to deliberate on medical issues.
“There is this idea of transformative potential with deliberations,” Blacksher said. “Viewpoints may evolve in light of evidence or exposure to viewpoints that are quite different from one’s own, or even just from having the opportunity to reflect on why one thinks what they think.”
Tarab and Yang voiced concerns over this approach, asking Blacksher how policymakers can ensure that patients understand the complex issues they are weighing in on.
“People will surprise you,” Blacksher replied. “We invest millions of dollars in these very sophisticated interventions that are supposed to improve people’s health. And very often they simply fall flat because we actually haven’t talked to the people.”
Yang spoke on patient and family advisory councils — hospital committees comprising patients, their families, and medical professionals — noting their role in promoting patient engagement in medical decisions.
“The formation of the PFAC was intended to facilitate patient and family participation in hospital care and decision-making, information sharing, as well as policy and program development,” he said.
Yang noted that Beth Israel Deaconess Medical Center has now established three PFACs — a hospital-wide PFAC, one for adult intensive care, and one for neonatal intensive care — to better integrate patients and their families into the decision-making process.
“It really has been a transformative entity within our hospital,” Yang said.
Tarab discussed the difficulties of balancing the diverse perspectives of patients through PFACs, pointing out that the significant commitments of membership may result in an unrepresentative body.
“That’s the challenge that we have when we choose members to join PFACs is how we can balance opinions and perspectives within these councils,” he said. “The bigger question is, do we really represent the community within these members of the council?”
Tarab proposed other ways of inviting public input — such as patient surveys — but noted additional difficulties, such as limiting perspectives to only those who already visit the hospital.
“We usually get only the perspective from the patients, not necessarily the broader perspective of the public,” Tarab said.
All three experts stressed the importance of public engagement despite disagreements on how to do so effectively.
“Knowing what people’s values are and knowing what people’s concerns are and knowing how people are thinking about risks and benefits and getting a sense of that value landscape can inform leadership’s view about what to do,” Blacksher said.
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