How Can a Valid Research Agenda for Patient-Reported Outcomes Be Defined Without Patient Input?

Abstract

Patient-centered outcomes research (PCOR) seeks to improve the quality of health care by ensuring that patients’ values and preferences are included in the research process. Methods to incorporate patient-reported outcomes (PROs) along with other clinical metrics are central to effective PCOR strategies.2 Crude markers of success are insufficient: patients likely care about 30-day mortality, but longer-term survival, functional outcome, and quality of life are paramount.3 As experienced researchers funded by the Patient CenteredOutcomesResearch Institute,we greatly appreciate the timely research agenda developed by Pezold and colleagues.4 We applaud their foresight to convene an inaugural Patient-Reported Outcomes in Surgery Conference. Although their methods were mostly sound, we question the validity of the proposed research agenda because of 1 major oversight. The criterion standard for effective PCOR is patient engagement. However, surgeons and researchers overwhelmingly dominated the conference, theDelphi proceedings, and the process of developing the research agenda. Only 2 of the 143 conference registrants (1.4%)were patient advocates, and only 1patient advocateparticipated ineachDelphi round.Was the patient’s voice truly heard? The Patient Centered Outcomes Research Institute includes patients on every review panel andexpects patients to bepart of the investigative team for all funded projects. To provide patient-centered care, patients must not only participate as research subjects but also workalongsideus as collaborators andcoinvestigators. For example, 2patients coauthored thepublicationbyPopoola et al5 reporting a Delphi assessment of patient preferences regarding approaches to venous thromboembolism education. Without patient input, the research domains set forth may not be prioritized in an order that matters to patients. Although patients certainly care about using PROs for decision making, the other 2 domains are less patient centric. Electronic health record (EHR) integration seems clinician centric. Do patients really have preferences for how PROs are presented to clinicians in the EHR? Quality assessment seems researcher centric. Do patients care about the validity of using PROs for risk adjustment? Might patients contribute different priorities altogether? It is well known that perspectives of clinicians and patients differ and that clinicians cannot accurately predict patient preferences. We expect all patients to prefer an oral agent over an injectable for venous thromboembolism prophylaxis but the study by Wong et al6 found that was not the case when hospitalized patients were directly surveyed about the rationale behind their preferRelated article page 930 Research Original Investigation Developing a Patient-Reported Outcomes Surgical Research Agenda

DOI: 10.1001/jamasurg.2016.1695

Cite this paper

@article{Kodadek2016HowCA, title={How Can a Valid Research Agenda for Patient-Reported Outcomes Be Defined Without Patient Input?}, author={Lisa M. Kodadek and Brandyn D. Lau and Elliott R. Haut}, journal={JAMA surgery}, year={2016}, volume={151 10}, pages={936-937} }