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Strengthen the Evidence for Maternal and Child Health Programs

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Evidence Tools
MCHbest. Medical Home: Family Centered Care.

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Strategy. Consumer Participation in Health Care Governance

Approach. Engage with parents on clinic or hospital health care governance to improve systems of care

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Overview. 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 community partners 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.[1] 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.[2, 3] 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.[4]

Evidence. Expert Opinion. Strategies with this rating are recommended by credible, impartial experts, guidelines, or committee statements; these strategies are consistent with accepted theoretical frameworks and have good potential to work. Often there is literature-based evidence supporting these strategies in related topic areas that indicate this approach would prove effective for this issue. Further research is needed to confirm effects in this topic area.

Access the peer-reviewed evidence through the MCH Digital Library or related evidence source. (Read more about understanding evidence ratings).

Source. What Works for Health (WWFH) Database (County Health Rankings and Roadmaps)

Outcome Components. This strategy has shown to have impact on the following outcomes (Read more about these categories):

  • Patient Experience of Care. This study improves individuals' perceptions, feelings, and satisfaction with the healthcare services they receive.
  • Policy. This strategy helps to promote decisions, laws, and regulations that promote public health practices and interventions.

Detailed Outcomes. For specific outcomes related to each study supporting this strategy, access the peer-reviewed evidence and read the Intervention Results for each study.

Intervention Type. Policy Development and Enforcement (Read more about intervention types and levels as defined by the Public Health Intervention Wheel).

Intervention Level. Community-Focused

Examples from the Field. There are currently no ESMs that use this strategy. As Title V agencies begin to incorporate this strategy into ESMs, examples will be available here. Until then, you can search for ESMs that have similar intervention components in the ESM database.

Sample ESMs. Here are sample ESMs to use as models for your own measures using the Results-Based Accountability framework (for suggestions on how to develop programs to support this strategy, see The Role of Title V in Adapting Strategies).

Quadrant 1:
Measuring Quantity of Effort ("What/how much did we do?")

PROCESS MEASURES:

  • Number of clinics or hospitals that establish consumer participation mechanisms (e.g., patient advisory councils, board positions) for parents in health care governance. (Shows the adoption and scale of the approach)
  • Number of parents recruited and trained to serve as consumer representatives in clinic or hospital health care governance roles. (Indicates the capacity and readiness of the parent workforce to engage in the approach)

OUTCOME MEASURES:

  • Number of healthcare policies, practices, or services that are developed or improved with input and guidance from parent consumer representatives in governance roles. (Shows the approach's impact on shaping patient-centered care delivery)
  • Number of clinics or hospitals that demonstrate measurable improvements in patient satisfaction, experience, and outcomes as a result of incorporating parent perspectives into governance decisions. (Indicates the approach's impact on driving system-level enhancements in pediatric care quality)

Quadrant 2:
Measuring Quality of Effort ("How well did we do it?")

PROCESS MEASURES:

  • Percent of parent consumer representatives who receive comprehensive orientation, training, and ongoing support to effectively participate in health care governance roles. (Shows the quality and preparedness of the parent workforce to contribute to governance process)
  • Percent of health care governance meetings or initiatives that provide meaningful opportunities for parent consumer representatives to share their perspectives, priorities, and recommendations. (Indicates the authenticity and influence of parent participation in governance decision-making)

OUTCOME MEASURES:

  • Percent of clinics or hospitals that regularly seek and incorporate parent feedback and insights into quality improvement and patient experience initiatives. (Shows the approach's effect on institutionalizing patient and family engagement as a core component of organizational culture and practice)
  • Percent of healthcare services, policies, or programs that align with the needs, preferences, and values of the patient population served, as identified by parent consumer representatives in governance roles. (Indicates the approach's impact on ensuring patient-centeredness and responsiveness of care delivery)

Quadrant 3:
Measuring Quantity of Effect ("Is anyone better off?")

PROCESS MEASURES:

  • Number of best practices, tools, and resources created and disseminated to guide clinics and hospitals in successfully integrating parent consumer representatives into governance structures and process. (Shows the knowledge generation and sharing efforts to facilitate widespread adoption of the approach)
  • Number of partnerships and collaborations established between clinics, hospitals, patient advocacy organizations, and community groups to support and sustain parent engagement in health care governance. (Indicates the level of multi-partner commitment and coordination to advance the approach)

OUTCOME MEASURES:

  • Number of parent consumer representatives who transition into other leadership roles (e.g., patient supporters, community organizers, policy advisors) to champion patient-centered care and health equity beyond their governance experiences. (Shows the approach's ripple effect on building a pipeline of parent leaders and change agents)
  • Number of clinics, hospitals, and health systems that report cost savings, efficiency gains, and improved resource allocation as a result of aligning governance decisions with patient and family priorities identified through parent consumer representation. (Indicates the approach's impact on driving value-based, patient-centered care transformation)

Quadrant 4:
Measuring Quality of Effect ("How are they better off?")

PROCESS MEASURES:

  • Percent of clinics or hospitals that provide language assistance, translation, transportation, childcare, and other enabling services to support diverse parent consumer representatives in their governance roles. (Shows the accessibility and equity of the approach's implementation)
  • Percent of parent consumer representatives who are compensated or recognized for their time, expertise, and contributions to health care governance, in ways that are fair and equitable. (Indicates the valuing and legitimization of parent engagement as an integral component of health care leadership and decision-making)

OUTCOME MEASURES:

  • Percent reduction in health disparities and inequities experienced by children and families from groups experiencing marginalization, as a result of parent consumer representatives advocating for and influencing governance decisions that promote health equity. (Shows the approach's impact on advancing social justice and reducing unjust differences in health outcomes)
  • Percent of health care system transformation efforts (e.g., value-based care, accountable care organizations, population health management) that prioritize and invest in parent consumer engagement as a fundamental driver of patient-centered, equitable, and efficient care delivery. (Indicates the approach's influence on reshaping the paradigm and priorities of the health care ecosystem towards patient and family partnership)

Note. When looking at your ESMs, SPMs, or other strategies:

  1. Move from measuring quantity to quality.
  2. Move from measuring effort to effect.
  3. Quadrant 1 strategies should be used sparingly, when no other data exists.
  4. The most effective measurement combines strategies in all levels, with most in Quadrants 2 and 4.

Learn More. Read how to create stronger ESMs and how to measure ESM impact more meaningfully through Results-Based Accountability.

References

[1] 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.

2 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.

3 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.

4 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.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.