Understanding Patient Preferences for Informed Decision-Making
The specific aims are (1) to reach patients outside the clinical setting—before clinical encounters— to explore their preferred approach to making decisions and (2) to follow those patients into the clinical encounter to study their experience in discussing decisions with clinicians. An interactive preventive health record (IPHR) that approximately 17,000 patients currently use to learn about recommended preventive services will incorporate a new module for patients who face decisions about breast, colorectal, or prostate cancer screening. The IPHR currently communicates with the electronic medical record systems of 14 practices caring for more than 150,000 patients. The new module will pose a series of questions about preferences for informed decision-making (IDM). Using a graphical interface to respond, patients will describe their interest in making a decision, receiving more information and the desired level of detail, getting help with weighing options, the perceived benefits and harms of IDM, and desired next steps. In Year 1, both the content and implementation of the module will be designed in consultation with patients, clinicians, health systems, and decision science experts through focus groups, cognitive/usability testing, and advisory panels.
The goal is to develop an instrument that is scientifically valid but also easy and interesting to complete. The IPHR will be programmed to capture patients' IDM preferences, display resources that reflect those preferences, track when those resources are examined, and notify practices when patients want to discuss the decision with their clinician. The study therefore tests the IPHR as both a research tool and a patient resource. At least 3,000 primary care patients are expected to view the IDM preference module in Year 2. The pilot will examine how well the system reaches patients, survey completion rates, the choices (IDM preferences) patients express, the online resources they examine, and whether IDM preferences cluster in patterns. With patients' consent, the first office visit that occurs after the IPHR session will be audio recorded to examine how well the patients' concerns are addressed and how the IPHR affects outcomes. Three hundred surveys will be emailed immediately after office visits to the patient and clinician to contrast their perspectives on the encounter against the audio record and IPHR data.
RELEVANCE The mission of PCORI is to "help patients make more informed healthcare decisions," but a patient-centered approach must begin with knowledge of what patients want from informed decision-making (IDM). Knowing what types of decision support to offer patients—and setting priorities for decision support research—requires better data on the information needs of patients and how those needs vary by individual, decision type, and context. Asking patients about this at clinical encounters, when they are hurriedly confronted by decisions, is impractical, if not misleading. Research must not only devise the right questions to draw out IDM preferences but also find a more patient-centered place for posing the questions. This project uses technology to engage patients outside the clinic. An online personal health record currently offered at 14 primary care practices will host a new module that invites patients to describe how they approach decisions. This module will collect research data but also link patients to online resources that match their preferences, a feature they can revisit at their convenience. The system will also enable patients to notify clinicians if they wish to discuss the decision at their next visit. The ensuing office visit will be studied to examine how well the patient's concerns are addressed. This project conforms closely with PCORI goals: It involves multiple stakeholders—patients and clinicians—in all project stages. It seeks the patient perspective and learns how people research choices. It promotes IDM in ways that respect patient autonomy. It devises an innovative patient-centered decision support tool that accounts for individual preferences. Audio recordings and surveys immediately after visits will identify the gaps perceived by patients and providers.
Hochheimer CJ, Sabo RT, Krist AH, Day T, Cyrus J, Woolf SH. Methods for Evaluating Respondent Attrition in Web-Based Surveys. J Med Internet Res. 2016 Nov 22;18(11):e301. PubMed PMID: 27876687.
Woolf SH, Zimmerman E, Haley A, Krist AH. Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy. HealthAffairs 2016 April 01;35(4):590-594.
VIDEO (below): Engaging Patients in Research
Engaging patients and other stakeholders helps ensure that research addresses their most pressing questions.