Concerns regarding poor quality and outcomes of healthcare persist throughout the world. Research can contribute to effective solutions, but the value and use of research by patients, clinicians and health system leaders remain disappointing. Embedded or partnership research approaches involving close collaboration between researchers, patients and health system leaders can enhance the relevance, value, use and impact of research in health system and patient decision making. Embedding researchers in healthcare systems and active, sustained collaboration between researchers and research users facilitate identification of important questions and knowledge needed to make better decisions, improved study design and conduct, and better interpretation and application of findings.
Optimal research-operations collaborations produce (1) timely, relevant answers to key healthcare and public health problems as well as (2) publications in peer reviewed journals and other contributions to scientific knowledge. Partnership research approaches and methods are varied and used in a small but growing number of organizations. However, researchers, patients, clinicians and health system leaders are not aware of the range of available organizational models, the different study designs and methods appropriate for partnership research, or the advantages and disadvantages of each model, design and methods choice. Growth of partnership research programs requires that researchers, users and those establishing and funding such research have access to detailed examples and guidance for best practice.
The conference and associated activities will develop guidance to accelerate realization of the vision of the learning healthcare system in which research is conducted to guide continuous improvements in healthcare quality, safety, equity, and value and, simultaneously, to produce useful scientific knowledge. The proposed conference will achieve its aims through literature review, presentations and small group working sessions in which experts discuss features of partnership research programs and develop guidance and recommendations, with post-conference deliberations via email and phone calls to develop and carry out dissemination and follow-up plans. Extensive patient and clinician/professional engagement will occur, guided by PCORI engagement principles.
We have engaged stakeholders throughout the early phases of conference planning and design, establishing a Planning Steering Committee of stakeholders from health systems and other policy and practice organizations, research programs, funding agencies, and patients. The Committee will continue regular calls. These engagement methods will assure all collaborators will actively contribute to refinements to the conference planning. Input from all members will be sought in areas that draw upon their expertise and experience, ensuring they will all have an equal voice and their contributions valued.
The conference will generate specific recommendations for actions required from researchers and research leaders, patient and consumer stakeholders, clinicians and health system leaders, and policy leaders. The recommendations and supporting content will be documented in a report, journal article, conference presentations and webinars intended to facilitate establishment and expansion of partnership research programs leading to improved implementation and impact of patient-centered outcomes research, comparative effectiveness research, and related research.