CHARN DIPEx Feasibility Study

Ochin, Inc., Portland OR

Investigators

Abstract

? DESCRIPTION (provided by applicant): Patient experience is a cornerstone of patient-centered outcomes research. Ensuring that patients as well as their families, health care professionals, and health care policymakers have appropriate information to make informed health care and policy decisions is a central goal of comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). Methodological standards from the Patient-Centered Outcomes Research Institute (PCORI) stress the importance of reflecting the patient's voice in every aspect of the selection, design, conduct, and dissemination of research studies, including appropriately engaging people representing the population of interest. To rise to these standards, we must understand the priorities and experiences of a broad range of patients, including low income, minority, and other underserved populations. To achieve truly meaningful patient engagement, we need innovative approaches for understanding patient experiences, especially among vulnerable and harder-to-reach patients whose voices are less likely to be heard. The Database of Individual Patients Experiences (DIPEx) is an innovative, evidence-based approach for understanding health experiences that could be leveraged to engage a broader range of patients to inform the development and conduct of PCOR. The DIPEx model, developed in 2001 by the Oxford University Health Experience Research Group (HERG), is recognized by the UK National Health Services as the `gold standard' for research into patients' and caregivers' experiences. DIPEx utilizes rigorous qualitative research methods to collect and analyze interviews about the experiences of specific illnesses or health conditions. If developed and implemented properly, the DIPEx methodology has the potential to augment patient engagement and enhance our understanding of the experiences of patients in the health care safety net, a population traditionally underrepresented in clinical research. To this end, we will partner with stakeholders from the Community Health Applied Research Network (CHARN), a network of federally supported community health centers (CHCs), to assess the feasibility of this approach and to identify and begin to develop the infrastructure needed to implement the DIPEx methodology. Specific Aim 1: Assess CHC patient, clinician/clinic staff, and researcher information needs and priorities for research regarding the health experiences of safety net patients. Specific Aim 2: Through interactive user testing with CHC patients, clinicians/clinic staff, and researchers, assess the relevance and utility of the health experiences information presented on the UK DIPEx website (www.healthtalk.org) and any adaptations needed in the US safety net context. Specific Aim 3: Identify the barriers, facilitators and infrastructure needd to implement the DIPEx approach in a US safety net setting, including regulatory approvals, recruitment strategies, training needs, and dissemination strategies.