National Center for Health Research, March 2, 2020
National Center for Health Research’s Public Comments on the Agency for Healthcare Research and Quality’s Technical Brief on Strategies for Patient, Family, and Caregiver Engagement
Thank you for the opportunity to comment on the Agency for Healthcare Research and Quality’s Technical Brief on Strategies for Patient, Family, and Caregiver Engagement.
The National Center for Health Research (NCHR) is a nonprofit think tank that conducts, analyzes, and scrutinizes research, policies, and programs on a range of issues related to health and safety. We do not accept funding from companies that make products that are the subject of our work.
While we commend the Technical Brief’s aim to outline the currently available evidence on patient and family engagement strategies for managing chronic conditions, we have several suggestions:
Does existing patient engagement research include patients who have been harmed by complications of their treatment? Such patients tend to be excluded from studies or patient engagement activities at the health system and community/policy levels if they seem angry or less likely to be cooperative, and thus their important perspective can be missed when patients are selected for engagement efforts or studies.
The Brief notes a lack of systematic measurement of potential harms, such as anxiety. For example, the Brief mentions that receiving information through patient portals may be distressing or confusing to some patients, but this potential stress was not systematically measured. Is research needed to determine how providers can be sensitive to the engagement preferences of patients, regarding patient portals and other strategies?
We agree with the identified seven needs for future research, such as the development of technology-based tools accessible for those with little technological skill. Additionally, there were several research gaps identified in the brief that would benefit from further emphasis. These include the lack of systematic reviews addressing direct patient care for those with mental illness, and reviews on outcomes for strategies for those with multiple chronic conditions. Also, there is a need for more systematic reviews concerning children, as well as further assessment of shared decision-making and patient-provider communications on clinical outcomes.
In summary, this Technical Brief provides a needed analysis of the research on engagement strategies for patients, families, and caregivers. As such, it is a valuable tool to assist healthcare providers in making decisions regarding strategies for patient engagement. We recommend that the above suggestions be added to the identified needs for future research.
The National Center for Health Research can be reached at info@center4research.org or at (202) 223-4000.