November 18, 2022
Ledge Light Health District, Southeastern Connecticut

Introduction

Engaging community in public health work has a positive impact on a range of health outcomes across various conditions. Public Health Forward: Modernizing the U.S. Public Health System includes a recommendation to strengthen collaboration between community-based organizations (CBOs) and public health departments. The report calls on health departments to formalize public health planning and processes that rely on input from, and share decision-making with, CBOs and the people they serve. Shared decision-making requires deliberate strategies to center the community’s expertise in all aspects of program planning, provide the space for meaningful dialogue and develop shared priorities and actions that address the community’s self-identified needs.

Context

When the Affordable Care Act community health needs assessment (CHNA) requirement was enacted, Lawrence + Memorial Hospital (L+M) and Ledge Light Health District (LLHD), located in southeastern Connecticut, agreed it would be mutually beneficial to collaborate on developing a CHNA and Community Health Improvement Plan (CHIP). The hospital had resources for a robust assessment and the health department had data, expertise in analyzing community health needs, and strong connections with the community. The two organizations set up an advisory board that included a wide range of community organizations and individual community members, which eventually evolved into the Health Improvement Collaborative of Southeastern Connecticut. This group supports CHNA/CHIP work and shares a commitment to using a collective impact approach to address inequities through programmatic and systems level change with a focus on dismantling racist structures.

Key Actions

Make structural changes to support process changes.
  • Often in traditional governance structures, meetings are run and decision making is led by people with a higher level of privilege than the community served. These structures reinforce existing power differentials and changing them to incorporate people with lived experience into the leadership structure is critical to sharing decision making power.
    • The L+M and LLHD leads started as co-chairs of the advisory board they established. As the advisory board expanded into HIC, the leaders recommended a self-selected coordinating team be established to support and guide HIC’s work between meetings. The coordinating team has eight members, including the L+M and LLHD members.
  • Inviting people with lived experience to the table and asking them to vote on issues such as health priorities or actions to address them does not guarantee that shared decision-making will occur. Even in a well-established collaborative or committee, individuals may disengage for any number of reasons. For example, topics may be irrelevant to community members, discussions may contain too much professional jargon, power dynamics may elicit fear of voicing an opposing opinion, or other committee members may commit microaggressions toward community members with minority identities. Deliberately seeking feedback on decision making processes can surface issues and concerns that may not be clear or top of mind to the people who are holding the power.
    • In the process of preparing for and holding a strategic planning retreat to kick off the coordinating team, a consultant interviewed coordinating team members and learned that some interviewees felt their participation was “tokenism” and that the L+M and LLHD leads held the power for the group.

Make others’ lived experience and expertise the center of discussions about how to advance health equity. Taking this approach is key to embracing new decision-making processes in collaborations with CBOs and the communities they serve.

  • The HIC currently is expanding its qualitative data collection as the most recent CHNA is being finalized, to ensure sufficient information to characterize health inequities. Moreover, HIC is working to expand its reach to individual community members for their input on health priorities. Both actions center the community’s voice and directly or indirectly enhance shared decision-making for determining CHIP activities.

It is important to co-create a decision-making process that has the full support of those who will be using it. The process ideally centers lived experience and gives ample space for airing concerns.

  • The coordinating team proposed a voting system in which members express their level of agreement with a 1 (low) to 5 (high) rating. Decisions pass if all votes are 3 or higher; anyone with a 1 rating explains their concerns to the group, and the group decides whether more discussion is needed or to advance the decision. The full HIC accepted this process, and members who had largely remained silent in the past began to contribute more freely.
  • The decision-making process is captured within a longer Purpose and Procedures (P&P) document, developed by a consultant and revised by the coordinating team. The P&P then underwent a highly iterative process with the full HIC to ensure sufficient time for all members to understand and contribute to the final product. It took about one year to complete, and is regarded by most, if not all, HIC members as an effort that was more important than any deadline related to the CHNA/CHIP work.

Deepening everyone’s understanding of and sensitivity to microaggressions provides a foundation for the open and honest conversations that are needed for a group to make well-informed decisions. Group members must be receptive to learning how what someone says and does can be dismissive and hurtful, and how to respond in a way that promotes trust and understanding. Moreover, having open and honest discussions may necessitate surfacing and addressing microaggressions in real time. For people holding power, this work can be uncomfortable. For people of color, this work can not only be uncomfortable but also can trigger a stress response based on past trauma. Indeed, it might feel unsafe due to fear of consequences resulting from the discomfort experienced by people holding power. For these reasons, it is important for group members to develop a shared commitment to addressing microaggressions in a “safe space,” i.e., an environment that is free from discrimination, criticism, harassment, defensiveness, or other negative repercussions.

Recommendations

Workforce

Devote resources to establishing a shared decision-making process.

Devote resources to establishing a shared decision-making process to ensure it receives sufficient time and effort by health department staff. Whoever is tasked with leading this work must have a solid foundation in navigating power dynamics, systemic racism, and oppression.

Financial

Compensate members with lived experience. Community members bring valuable expertise to the table and should be compensated accordingly.

Furthermore, for many, participation may be dependent on free childcare, food, a stipend, or other form of compensation.

  • To address this need, the HIC P&P includes a clause about compensation to ensure member participation. In addition, LLHD writes compensation for community members into every grant as allowable.

Funding decisions include determining whether to pursue a funding opportunity and if so, who would receive the funds and how they would be distributed. Shared decision making ensures these issues are resolved in a way that is best for the community (as opposed to an individual organization) and facilitates equitable distribution of funds.

  • The LLHD HIC member brings relevant RFPs to the Coordinating Team to determine whether the funds could support work aligned with the CHIP and, if so, which HIC member would be the best applicant. LLHD historically has served as the fiduciary entity, but they recognize that whether they should fill that role is a decision best left to the coordinating team.

Anticipated Impacts For Public Health Departments

The HIC is significantly expanding the community’s voice in the CHNA and CHIP.

(as described above)

People with lived experience are now included on specific program teams and a consensus-based method is used for decision making. As a result, COVID-19 vaccination levels and access to evidence-based interventions to prevent overdoses, including harm reduction services and medication-based treatment, have increased.

Potential Challenges To Implementation

Establishing a meeting schedule when everyone can participate.

Finding the right time for meetings can be a significant challenge. People whose jobs cover their time may not want to work after hours or on weekends, but often that is the only time that works for people with lived experience.

  • HIC members have an ongoing debate regarding the best time to meet, and because decisions are made at meetings, representation from a majority of group members is critical to achieving shared decision making.

As government entities using public funds, health departments can be limited in compensating people for their time. It is important to be clear with the group from the outset when such barriers exist.

  • For example, LLHD prohibited by law from providing compensation to undocumented immigrants.

Sustainability

Support the community’s development of shared decision-making practices.

In the spirit of “nothing about us without us,” practices designed by the community are much more likely to be perceived as successful and thus become sustainable.

Maintaining a written record helps to ensure consistency in the practice, continue a shared understanding of the practice that is not subject to individuals’ memories, and promote institutionalization of the practice.

  • HIC documented its procedures in its P&P document.

Introducing these processes throughout the health department and routinely highlighting improved outcomes will give staff the experience and incentive to institutionalize the practice.

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