The Ethical Imperative And Moral Challenges Of Engaging Patients And The Public With Evidence

Abstract

Engaging patients and the public with evidence is an ethical imperative because engagement is central to respect for persons and will likely improve health outcomes, facilitate the stewardship of resources, enhance prospects for justice, and build public trust. However, patient and public engagement is also morally complex, because evidence alone is never definitive. As patients and the public engage with evidence, value conflicts will arise and must be managed to achieve trustworthy decision making. We outline value conflicts likely to emerge in the following five settings: clinical care, health care organizations, public health, the regulatory context, and among payers. Using a variety of examples, we offer suggestions about how such conflicts may be managed, including providing more opportunities for democratic deliberation and having more explicit community discussion of how to balance personal choice and community well-being, transparent discussions of cost and quality outcomes, and greater patient engagement in community-based participatory research and the governance of learning health systems.

An Educational Intervention to Train Professional Nurses in Promoting Patient Engagement: A Pilot Feasibility Study

“…Promoting patient engagement is increasingly acknowledged as a way to address the challenge of chronic conditions (Hibbard and Greene, 2013; Graffigna et al, 2014) and it has been widely advocated as a crucial component of patient-centered models of sustaining healthcare innovation (Thomson et al, 2005; Washington and Lipstein, 2011). Moreover, embracing the patient engagement paradigm is an ethical priority for healthcare systems across countries (Sherman and Hilton, 2014; Solomon et al, 2016; Weil, 2016): it is well-known as a key strategy to include the patients' preferences and expectations in services' design and delivery thus maximizing their clinical effectiveness (World Health Organization, 2002; Eldh et al, 2004; Koloroutis, 2004; Elwyn et al, 2007; Jordan et al, 2008; Eaton et al, 2015; Fisher et al, 2016). …”

Patient centred diagnosis: sharing diagnostic decisions with patients in clinical practice

“…Although the clinician should discourage imaging procedures that are not based on evidence, the decision should reflect the specific preferences and needs of this unique patient. 26 Learning about the recent diagnosis of renal cancer in a sibling might lead to an entirely different, jointly developed diagnostic plan, such as urinalysis and imaging of the kidneys if the urinalysis shows evidence of microscopic haematuria.…”

A home for patient-oriented research

“…1 We have a moral imperative to ground health research in their unique perspective and experience. 4,6 Recognizing this ethical duty, many funding organizations now endorse the meaningful engagement of patients in research.…”