Patient‐Engaged Research
Choosing the “Right” Patients to Avoid Pitfalls
Bibliographic Data
| ID | 20334361 |
|---|---|
| Authors | Emily A Largent (0000-0002-7536-5077), Holly Fernandez Lynch (0000-0001-7813-9879), Matthew S Mccoy (0000-0002-5273-3877) |
| Year | 2018 |
| Volume | 48 |
| Issue | 5 |
| Pages | 26-34 |
| Publication date | 2018-09-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | The Hastings Center Report (JOURNAL) |
| Journal identifiers | ISSN: 0093-0334 • E-ISSN: 1552-146X |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1002/hast.898 |
| PMID | 30311207 |
| OpenAlex | W2897597696 |
| Language | EN |
| Citations received | 7 |
| References cited | 23 |
To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.” This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps
Alternative medicine · Epistemology · Identification (biology) · Medical education · Neglect · Outcomes research · Premise · Psychiatry · Representativeness heuristic · Set (abstract data type) · Computer Science · Ethics in Clinical Research · Medicine · Mental Health and Patient Involvement · Patient-Provider Communication in Healthcare · Psychology · Social Psychology
Patient engagement in quality of life research
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Ethics of care challenge to advance directives for dementia patients
What can data trusts for health research learn from participatory governance in biobanks
Whom to Engage in Patient‐Engaged Research? Reflection on Selection
Acceptability of a mobile sensing application to characterize community integration among homeless‐experienced veterans
Engaging Community Members to Eradicate Health Disparities
Evaluating patient and stakeholder engagement in research
Race and trust in the health care system
Low Health Literacy and Health Outcomes
Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute
Patient‐Centered Outcomes Research
The Participation of Community Members on Medical Institutional Review Boards
Ordinary people only
| Citations per year | 0.88 |
|---|---|
| Citation span | 2018 - 2026 (9) |
| Highly cited | No |