Consumer participation in health care governance

Health care entities are often governed by boards that are charged with setting the organization’s strategic direction; board decisions help determine organizational policy, shape patient services, and ultimately, affect patient outcomes. Governing boards are generally comprised of a variety of stakeholders and can include consumer representatives, who are usually patients of the organization. Consumers may also be integrated into other governance activities, participate in projects to develop and disseminate consumer-friendly health and comparative quality information, or take part in health care system redesign efforts (Mende 2013*). Patient advisory councils (PACs), also known as patient and family advisory councils (PFACs), made up of patients, family members, health care providers, and administrative staff can carry out these governance activities as well, in settings including hospitals, primary care practices, and community health centers (Sharma 2016, Peikes 2016*). Consumer roles may be long-term commitments such as reviewing current services or potential change initiatives, or short-term engagements to provide feedback or preferences on discrete questions (Crawford 2003).

Expected Beneficial Outcomes (Rated)

  • Improved quality of care

  • Increased patient engagement

  • Increased organizational accountability

Evidence of Effectiveness

Involving consumers in health care governance is a suggested strategy to improve health care quality (DeCamp 2019*, Peikes 2016*, Mende 2013*), service effectiveness, and organizational accountability (DeCamp 2019*), as well as to empower disadvantaged consumers (Crawford 2003). Available evidence suggests that consumer engagement in priority setting may result in different decisions than those that would have been reached without it (Greene 2016a, Mitton 2009*). Available evidence suggests that including patient representatives on health care governance boards may increase patients’ trust in the organization (DeCamp 2019*), and patient advisory councils (PACs) in primary care clinics may promote patient-centered practice improvements (Sharma 2016) and increase patient engagement (DeCamp 2019*, Peikes 2016*). Additional evidence is needed to confirm effects.

Experts suggest that when creating a health care governance board, organizations define the board’s responsibilities and how to identify potential participants, factoring in diversity by race, professional expertise, and ability to speak to the patient experience (DeCamp 2019*, Wright 2017). Similarly, PACs should include participants representative of the practice’s patients and clinic staff trained in group facilitation strategies, be clear about time commitments and members’ roles, and assign accountability for practice improvement projects (Sharma 2016). PACs can also form in hospitals, where they may help address competing organizational priorities that are a barrier to patient and family engagement (Herrin 2015*).

Studies of Aligning Forces for Quality (AF4Q), a large-scale US-based effort to involve consumers in health care governance which ran from 2007-2015, suggests that identifying appropriate participants, defining consumer roles, and resistance from some stakeholders can be challenges to successfully engaging and integrating consumers into governance. Requiring consumer involvement, however, appears to help ease barriers to including consumers in governance discussions (Greene 2016a, Mende 2013*).

Impact on Disparities

No impact on disparities likely

Implementation Examples

Consumer involvement in health care governance is becoming more common in both public and private organizations. Health centers supported by the Health Resources and Services Administration (HRSA) are required to have consumers on their governing boards, as are accountable care organizations (ACOs) (HRSA-Health centers, DeCamp 2015). Many ACOs provide opportunities for patient participation in governing boards; fewer organizations involve patients in quality improvement projects (Shortell 2015*). The Agency for Healthcare Research and Quality (AHRQ) and the Institute for Patient- and Family-Centered Care (IPFCC) both provide resources on creating patient advisory councils (PACs); IPFCC includes additional information on how to improve diversity in PACs to provide a wider range of viewpoints (AHRQ-Patient advisors, IPFCC-PAC, IPFCC-PAC diversity).

In Massachusetts, the General Court of the Commonwealth established that every hospital in the state must have a PAC to advise on patient and provider relationships, quality improvement initiatives, institutional review boards, and patient education on safety and quality matters (MA General Court-Section 53E). Massachusetts General Hospital established its first patient and family advisory council (PFAC) in 1999; as of 2019, it maintains seven PFACs focused on different conditions, including heart and vascular issues and pediatric oncology (Mass General-PAC).

In 2018, the New York State Health Foundation reported that approximately 59% of hospitals in New York State have PACs and that they generally perform better on quality measures than hospitals without PACs; this report includes guidance on PAC best practices and recommendations which can be applied to PACs nationwide (NYSHealth-PAC).

Implementation Resources

CC-Consumer input - Community Catalyst (CC). Best practices for meaningful consumer input in new health care delivery models. 2012.

AF4Q-Lessons learned - Aligning Forces for Quality (AF4Q). Improving health & health care in communities across America. Lessons learned.

HRET-Patient advisors - Health Research & Educational Trust (HRET). Partnering to improve quality and safety: A framework for working with patient and family advisors. Chicago, IL: Health Research & Educational Trust. 2015.

AHRQ-Patient advisors - Agency for Healthcare Research and Quality (AHRQ). Strategy 1: Working with patients and families as advisors, implementation handbook. Guide to patient and family engagement.

Mass General-PAC - Massachusetts General Hospital (Mass General). Patient and family advisory councils, 2018-2019 annual report. Boston, MA. 2018.

Citations - Evidence

* Journal subscription may be required for access.

DeCamp 2019* - DeCamp M, Dukhanin V, Hebert LC, et al. Patients’ views about patient engagement and representation in healthcare governance. Journal of Healthcare Management. 2019;64(5):332-346.

Peikes 2016* - Peikes D, O’Malley AS, Wilson C, et al. Early experiences engaging patients through patient and family advisory councils. Journal of Ambulatory Care Management. 2016;39(4):316-324.

Mende 2013* - Mende S, Roseman D. The Aligning Forces for Quality experience: Lessons on getting consumers involved in health care improvements. Health Affairs. 2013;32(6):1092-1100.

Crawford 2003 - Crawford M, Rutter D, Thelwall S. User involvement in change management: A review of the literature. National Institute for Health Research, National Health Service (NHS). 2003:1-205.

Greene 2016a - Greene J, Farley DC, Christianson JB, Scanlon DP, Shi Y. From rhetoric to reality: Consumer engagement in 16 multi-stakeholder alliances. The American Journal of Managed Care. 2016;22(12):s403-s412.

Mitton 2009* - Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: A scoping review. Health Policy. 2009;91:219-28.

Sharma 2016 - Sharma AE, Willard-Grace R, Willis A, et al. “How can we talk about patient-centered care without patients at the table?” Lessons learned from patient advisory councils. Journal of the American Board of Family Medicine. 2016;29(6):775-784.

Wright 2017 - Wright B, Martin GP. Mission, margin, and the role of consumer governance in decision-making at community health centers. Journal of Health Care for the Poor and Underserved. 2014;25(2):930-947.

Herrin 2015* - Herrin J, Harris KG, Kenward K, et al. Patient and family engagement: A survey of US hospital practices. BMJ Quality and Safety. 2016;25(3):182-189.

Citations - Implementation Examples

* Journal subscription may be required for access.

HRSA-Health centers - Health Resources and Services Administration (HRSA). What is a health center?

DeCamp 2015 - DeCamp M, Sugarman J, Berkowitz SA. Meaningfully engaging patients in ACO decision making. American Journal of Accountable Care. 2015;3(2):30-33.

Shortell 2015* - Shortell SM, Sehgal NJ, Bibi S, et al. An early assessment of Accountable Care Organizations’ efforts to engage patients and their families. Medical Care Research and Review. 2015;72(5):580-604.

AHRQ-Patient advisors - Agency for Healthcare Research and Quality (AHRQ). Strategy 1: Working with patients and families as advisors, implementation handbook. Guide to patient and family engagement.

IPFCC-PAC - Institute for Patient- and Family-Centered Care (IPFCC). Creating patient and family advisory councils. 2019.

IPFCC-PAC diversity - Institute for Patient- and Family-Centered Care (IPFCC). Diversity matters: Improving diversity in patient and family advisory councils. 2018.

MA General Court-Section 53E - The General Court of the Commonwealth of Massachusetts. Section 53E: Patient and family advisory councils; establishment.

Mass General-PAC - Massachusetts General Hospital (Mass General). Patient and family advisory councils, 2018-2019 annual report. Boston, MA. 2018.

NYSHealth-PAC - New York State Health Foundation (NYSHealth). Strategically advancing patient and family advisory councils in New York State hospitals. 2018.

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