Increasing the Fidelity of Patient Voices and Their Impact on Health System Performance
Narrative accounts of patients’ experiences are a powerful tool for understanding how health care is working, and for improving it. However, too often these narratives are not elicited, documented, aggregated, and used in effective ways. At the CPP, we are committed to conducting qualitative research designed to gather patient accounts, and to assuring these accounts are heard by key decision-makers in health care and health policy.
Past & Ongoing Research
Eliciting Patient Narratives
In September of 2012, CPP began leading the qualitative arm of an interprofessional project, funded by the Agency for Healthcare Research and Quality (AHRQ), and implemented by a national team of researchers at Yale University, RAND, and the University of Wisconsin. The project “Eliciting Patient Experiences to Augment Public Reports on Health Care Quality,” is designed to improve how patients’ own accounts of their health care experiences are collected, incorporated into quality improvement, used to empower health care consumers, and incorporated into health system monitoring.
The project has two primary goals: (1) eliciting patient accounts of their experiences in ways that are more representative, fulsome and useful to various audiences than has been the norm for anecdotal commentary to date, and (2) presenting patient accounts to these multiple audiences in ways that render them more accessible and meaningful, while avoiding problems that can arise when qualitative accounts and quantitative metrics are combined in reports on health care quality.
Our project aims to pursue four distinct ways to use enhanced elicitation to improve the health care system: (1) encouraging patients to more actively participate in completing surveys of their medical experiences, (2) enhancing the ways in which consumers engage with public reports on health care quality, (3) informing quality improvement initiatives (conducted at either the provider, insurer, community or program level), and (4) activating consumers to interact with the health care system in a more empowered fashion.
Conveying Patient Narratives
With additional support from AHRQ, CPP faculty and affiliates have been exploring ways in which patient narratives can be effectively integrated into public websites reporting on the quality of health plans and health care providers, thereby enhancing consumers understanding about medical care and the clarity of their choices.
This ongoing research will make use of the patient accounts gathered with our refined elicitation techniques, experimentally test the impact of integrating these accounts on patient choice and use of standardized performance metrics, and explore the extent to which these experimental effects have lasting impact on consumer attitudes and behaviors.
The experiments will randomly assign participants to a half dozen variations of a website, each version integrating patient narratives with standardized information in a distinctive manner. They will then be asked to select a primary care physician. Over all experimental arms, roughly 1,000 participants, drawn from a panel representative of the general American population, will participate in the experiment, helping us to identify the ways in which narratives most effectively enhance consumers’ understanding, the clarity of their choice process, and their awareness of certain key metrics of clinician performance.
Patient Voices in Clinical Settings
In order for health care processes to work well for patients, those who design and run such processes must learn how they feel from the patients’ perspective and commit to on-going, collaborative re-design. CPP is committed to projects that allow us to practice, model, learn from and teach “patient engagement.”
One of our current projects in this area, funded by the Cystic Fibrosis Foundation, focuses on the diagnostic process for infants with abnormal newborn screens for cystic fibrosis. Parents’ anxiety after they receive news of an abnormal newborn screening test for their infant has been reported to cause stress even after sweat testing has been completed and the infant declared healthy. The threefold goal of this project, funded by the Cystic Fibrosis Foundation, is (1) to evaluate the current parental experience with CF NBS in NY State in order to understand parents’ experiences with CF NBS and how they believe the system could be improved, (2) to develop a quality improvement initiative designed to decrease anxiety levels for families and provide guidance to Centers in our consortium about how practice can be improved in this important domain and (3) to evaluate the role of the Pediatrician in the CF NBS process and provide education concerning new issues arising from the detection of the CFTR Metabolic Syndrome. We plan to evaluate the parental experience from the time that they are notified of the abnormal NBS result through completion of the sweat test.
A previous project included collaborating with affiliated researchers at the UW Health Innovation Program to study changes in attitudes and behaviors by providers engaging patients in a team-level primary care redesign effort in a large academic medical center. Forthcoming publications will document organizational readiness, describe design and implementation of the Patient Engagement program, and share findings including that over time, a significantly increased percentage of respondents believed that patients brought a unique perspective to a project, were confident of their ability to engage patients and had an interest in doing so
Research Under Development
Eliciting Narratives to Promote Patient Centered Care
In this project we would extend our recently-developed approaches for eliciting patient narratives to focus more precisely on key aspects of patient-centered, coordinated care and test the use of these narratives to both enhance consumer choice and improve quality of care.
These elicited accounts would fill gaps in existing measures of patient experience (e.g. how well clinical teams work together, how much warmth and emotional connectedness exists between patients and clinicians, and how responsive providers are to patients’ preferences and experiences) as well as complement existing measures by making them easier for consumer to interpret.
The first 18 months of the study would be devoted to developing these elicitation protocols, refining them through field testing, and collecting baseline data on patient experiences in these domains from a representative cross-section of the American public. Over the second 18 months of the project, we would pilot two applications. First, we would assess how elicited comments regarding patient-centered care affect both consumer engagement and choice of physician using an already field-tested experimental website. Second, we would incorporate elicited patient commentary regarding patient-centered care into established quality improvement processes at clinics providing primary care, assessing the feasibility of this sort of real-time feedback from patient experience to practice improvement.
A Video Archive of Systematically Collected Patients’ Narratives
CPP is working to obtain the resources necessary to become the U.S. home for an international Patient Experiences Video Archive.
Goals of this qualitative research initiative, and the on-line resource it will produce, include:
- To use qualitative research methods, principally analysis of narrative interviews, to explore how people experience various health conditions in their daily lives, in the context of their family, work and social environment.
- To identify issues that are important to people, including early signs and symptoms, ideas about causes, experience of diagnosis, treatments, professional attitudes, complementary approaches, information sources and needs, relationships with family, friends and colleagues, finding information and support.
- To provide accessible summaries of the most important aspects of people’s experiences with various conditions for widespread dissemination online, illustrated with selected extracts from the interviews.
- To create modules at www.healthtalkonline.org to improve public and professional understanding of the people’s experiences with various health conditions.
Patient experiences we propose to explore in our initial studies include:
- Experiences with emerging technologies, such as Whole Genome Scanning.
- Experiences with accessing insurance coverage and health services as the PPACA health reform act rolls out.
- Experiences with cancer survivorship.
The DIPEx charity in the U.K. produces a unique website, www.healthtalkonline.org, which features video and audio clips from carefully conducted in-depth interviews with patients about experiences of specific aspects of health and illness. Over 75 separate modules covering different conditions or health topics are currently available on the site, including several major cancers, cardiovascular disease, mental health, epilepsy, rheumatoid arthritis, pregnancy, screening, sexual health and experiences of carers of people with dementia. The interviews are generated and analyzed by experienced social science researchers most of whom are based in the Health Experiences Research Group within the University of Oxford’s Department of Primary Care Health Sciences.