Involving people with lived experience in state-level behavioral health reform is critical to driving effective change. People with firsthand experience navigating the behavioral health system have a unique understanding of its challenges and its opportunities, making them valuable partners in developing solutions. To effectively engage people with lived experience, it is important for states and other stakeholders to actively listen to their contributions, reflect, and engage to ensure understanding. This iterative process is not without challenges, but fostering an environment where everyone’s voice matters can help create a better, more effective behavioral health system.
Over the past year, the Center for Health Care Strategies (CHCS) engaged six consultants who have lived experience as both recipients of behavioral health care and as professionals working in behavioral health organizations at the state and national levels. Together, we developed resources to support states in meaningfully engaging people with lived experience in behavioral health reform. Through this partnership, CHCS built critical relationships and gained valuable insights. Our reflections, shared in this blog post, offer practical guidance for states seeking to improve their behavioral health systems.
Reflections on a Lived Experience Partnership
1. Prioritize trust and relationship building
Partnering with people with lived experience challenged our team at CHCS to approach its work differently. Engaging people for the purpose of learning from their personal experiences, in addition to their professional work, is a fundamentally different kind of working relationship, and trust is critical. CHCS sought to engage authentically throughout our collaboration. One effective approach was dedicating time at the start of each meeting to foster personal connections through opening exercises and icebreakers, as suggested by one of our consultants. This practice helped build trust with our consultants, which is critically important since many individuals with behavioral health needs have faced stigma and tokenization in the past.
To build trust, it is also important to find the right balance between acknowledging past harms and treating people with lived experience with respect and professionalism. These individuals deserve to be recognized as both individuals and professionals. They engage in a professional capacity, bringing valuable insights from their experiences. For information on building trust, see Meaningfully Engaging People with Lived Experience in Behavioral Health Reform: A Guide for States.
2. Maintain a balance between clear expectations and flexibility
At the beginning of our collaboration, CHCS and our consultants developed a charter that outlined our agreed-upon partnership structure and expectations. We agreed that meetings would be co-facilitated, and as the engagement progressed and trust deepened, we adopted a co-lead approach for written publications as well. While this gave our consultants greater ownership of the work, the co-lead strategy could have benefited from more structure and clarity regarding roles, perhaps through revisions to the charter document. As our work progressed, we also realized we needed more time, and we were fortunate that our consultants were able to continue working with us beyond the initially agreed-upon duration. To better account for the time involved in relationship building, it is wise to build into project workplans the additional time needed for this purpose.
3. Acknowledge missteps and work to repair them
When missteps inevitably occur, it is important to communicate openly about what went wrong and intentionally address and repair any harm. Early in our project, the CHCS team learned this upon sharing details of a separate but related stream of work with the consultants. Upon hearing about this body of work that did not include them, our consultants expressed concerns about us not informing them about that work sooner. This was particularly significant because people with lived experience are often tokenized in engagements and encouraged to endorse work that was already established without them. The consultants might not have felt comfortable speaking up about this if we had not been intentional about trust building. The CHCS team acknowledged consultants’ concerns and invited conversations about how to move forward. This also highlighted the importance of being transparent about any work that started before the engagement and being open to adjusting our approach in partnership with the individuals engaged. Most importantly, we learned that it is not the absence of missteps, but acknowledging and working through them together that facilitates trust.
4. Seek feedback from the individuals you engage
Seeking feedback throughout the engagement can provide valuable insights to guide future efforts and improve your approach. The CHCS team established processes to receive regular feedback through a consultant liaison who facilitated communication between the CHCS team and the broader group. We also solicited feedback from our consultants on how the work was progressing during each of our group meetings to ensure alignment. Toward the end of the engagement, the whole group completed an anonymous survey, providing candid feedback on their experience, including their comfort in engaging authentically with the CHCS team and opportunities for improvement. The CHCS team learned that our work involves much more than capturing consultants’ knowledge and perspectives and conveying that information to states. It is also about building relationships, communicating more openly and deeply than is typical in professional environments, and showing up as our true selves.
Future Directions
The partnership with our consultants strengthened the CHCS team’s commitment to engaging people with lived experience of behavioral health needs. Later in 2025, CHCS will launch a learning collaborative to assist four states in designing and implementing strategies to enhance behavioral health outcomes. Meaningful engagement with individuals who have lived experience will be a core strategy in these efforts. CHCS will continue partnering with our consultants, who will serve as technical assistance advisors to support states throughout the initiative. Look for a Request for Applications in the coming months!
