PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Providing opportunities for choice and self-determination is considered a critical component of person-centered medicine, and research suggests that doing so may enhance treatment engagement and outcomes. However, few tools are available that can quickly guide a patient through the critical preliminary process of clarifying one’s values, preferences, and ideals, which form the foundation for personalized health care.
This study aimed to develop a tool that would assist in the process of identifying and communicating patient preferences, concerns, and values to providers in the context of a treatment appointment.
Community-based participatory research using qualitative interviews (Phase 1), concept mapping (Phase 2), and decision-making tool development and pilot testing (Phase 3)
Participants, Interventions, Settings, and Outcomes
Phase 1, qualitative interviews. Participants were 22 persons living with a chronic illness, 10 family members, and 10 physicians. Eligibility criteria included being at least 21 years old and having been diagnosed with a chronic mental and/or physical illness, having a close loved one with chronic illness, or providing care for people with chronic illnesses. Qualitative interviews took place in a location selected by the interviewee, typically at home or another community-based location, or at the researchers’ office at the Yale Program for Recovery and Community Health.
Phase 2, concept mapping. Participants were 91 persons living with a chronic illness and 60 healthcare practitioners (physicians, Registered Nurses, Advanced Practice Registered Nurses, and other direct care providers who responded to an online survey). All concept mapping activities took place at the researchers’ office.
Phase 3, tool development and pilot testing. Based on Phase 2 findings, the research team developed a tool to elicit patient views about the importance of different aspects of one’s life, relationships, and healthcare processes and outcomes. This tool was pilot-tested with 15 persons living with a chronic illness who completed and shared the tool with their doctor at their next appointment. Pilot testing of the instrument was conducted in the doctor’s office during a routine appointment.
Qualitative interviews (Phase 1) were semi-structured, open-ended interviews conducted by trained stakeholder co-researchers.
Concept mapping statement generation sessions (Phase 2), were co-led by two trained stakeholder co-researchers. Qualitative statements were elicited in response to two questions: “What are the areas of your life that are the most important to you, that you value, that you hope for, and that give you meaning?” and “What does a doctor need to know about you in order to provide high-quality care?”
The online practitioner survey was designed using SurveyMonkey and solicited statements from practitioners about things they needed to know about their patients in provide high-quality and person-centered care.
In concept mapping sorting and ranking sessions, participants sorted 100 statements into piles based on perceived similarity to one another. These 100 statements were selected to represent the majority of themes/topics conveyed across all of the statement generation activities. Participants then rated each statement (using a 1–5 Likert scale) according to degree of importance to (1) the individual and (2) his or her doctor.
Participants involved in Phase 3, pilot testing the tool, met with a stakeholder researcher to complete the newly developed tool and then shared the tool with their doctor at their next appointment. Follow-up calls were made using a structured interview to all participants and to providers who consented to be contacted following the patient’s sharing of the tool. Structured interviews contained questions about overall thoughts about the tool, ease of use, utility, feasibility, perceived benefits, and suggestions for medication/future use.
Qualitative Data Analysis. Qualitative interviews were analyzed using a phenomenological process of four main steps: (1) gaining an overall impression of the text, (2) identifying and sorting themes, (3) condensing themes from codes to meaning, and (4) integrating themes and codes into concepts.
Quantitative Data Analysis. Data from the concept mapping sorting and ranking activities were analyzed using Concept Systems, Inc., software. Concept mapping analysis involved using categorical data to evaluate perceptions of interrelatedness of concepts and define clusters.
Quality of Data and Analysis. Interviewers/facilitators used structured interview techniques for qualitative interviews and concept mapping groups. Research assistants had lived experience with chronic illness and formal training in research methodology, interviewing techniques, and focus group facilitation. A community research advisory board consisted of patient and practitioner stakeholders who played a key role in all phases of research, including development of research questions, analysis and interpretation of data, and tool development.
Qualitative Interviews (Phase 1). Most patients recalled specific experiences in which they felt like they were not heard, respected, or trusted by a doctor and in which treatment decisions were made that felt inconsistent with their values and preferences. At the same time, most patients were able to identify at least one healthcare provider who they credited with having a significant and positive influence on their lives. The degree of specificity with which these diametrically opposed experiences were recalled was striking and in many ways helped patients have a very clear sense of what they needed and wanted in a healthcare provider. For physicians, the feasibility and success of shared decision making depended on three elements: patient characteristics, physician factors, and contextual factors. Family members described a delicate balance between supporting the autonomy and independence of their loved one while providing support.
Concept Mapping (Phase 2). The researchers identified six primary priorities for people with chronic illness: (1) their doctor’s role in their health care; (2) their own responsibilities in their health care; (3) their virtues, values, and core beliefs; (4) their connections with others; (5) their resources or challenges; and (6) their person-centered care. These six priorities, and the most important items within each, formed the foundation of shared decision-making tool that was subsequently developed.
Pilot Testing of Tool (Phase 3). In follow-up calls after sharing the tool with their provider, participants reviewed the tool favorably and said that it: helped them think through what they wanted out of the appointment; prompted discussions about topics including educational goals, weight, and respecting patients’ time; and, most notably, that the tool seemed to shift the doctor-patient dynamic during the appointment. Providers commented on the utility of such a tool in helping to quickly inform them about pertinent areas of a person’s life and said it was useful in prompting discussions that led to more shared decisions.
The study sample consisted largely of individuals with low income or who were on disability and may not have access to preferred health care. The study is also limited in that its scope does not extend to testing the impact of the supported decision making tool.
Results from a pilot administration of the tool suggest that completing the tool before an appointment and sharing the brief summary with practitioners at the beginning of an office visit may promote more “person-centered” interactions and shared decision making throughout the appointment and result in more positive evaluations of the patient-practitioner interactions during the visit.