Table 3.

Future Research Needs/Questions to Advance the field of Patient and Family Engagement

Proposed Research Questions
Patient and Family Engagement in Direct Care What education and support strategies are most effective in encouraging and supporting patients and families to engage effectively in their own health care and how do these strategies compare to one another? How does a patient’s access to their clinical information impact health outcomes, health care utilization, and patient safety? What key concepts should be included in standardized measures to assess patient and family engagement in primary care? How do we best measure (e.g. validate) the impact of patient and/or family engagement at the individual level on access to care, utilization, health outcomes, patient and family satisfaction, and patient safety? How feasible is it for primary care practices to implement patient and family engagement strategies beyond research projects? How do we measure the impact of patient and/or family engagement on a practice, including staff and clinician satisfaction, staffing, cost efficiency, and time?
Education for Physicians and Staff to Encourage and Support Patient and Family Engagement in Individual Care
What education and support strategies are most effective in encouraging and supporting physicians and staff to partner effectively with patients and families? In what ways can health information technology support the development and implementation of patient and family engagement strategies/tools; for whom (i.e. which patients) and under what conditions are these strategies most likely to be successful? How do we best train physicians in the additional competencies required (e.g., communicating with patients and their families during clinic visits) to effectively engage family members in ambulatory visits for adult patients?
Patient and Family Engagement in Practice Redesign and Quality Improvement
What infrastructure and key behaviors or actions on the part of the health care organization are needed to foster and sustain involvement of patient and family advisors in primary care transformation, QI, safety, or other efforts to improve care? What is the best method to provide training and support to patients and families so that they can effectively participate as advisors in quality improvement initiatives and primary care redesign efforts? What are the training needs of health care professionals, patients and families to better facilitate effective partnerships in quality improvement and practice redesign? What are the added benefits and costs of engaging patients and families in QI and primary care redesign efforts?
Patient and Family Engagement in Research
How can we best engage individual patient and family advisors and patient- and family-led organizations in the development of measurement tools, the design of measurement protocols, the implementation of relevant research studies and the interpretation/ dissemination of results? What are the best methods for preparing patient and family advisors and patient- and family- led organizations to partner in primary care medical home research?