Why It Matters
Saying you’re going to improve patient engagement and doing it are two different things.
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Valuing Lived Experience: Why Science Is Not Enough

By Santiago Narino | Wednesday, August 21, 2019

Valuing Lived Experience: Why Science Is Not Enough

As IHI’s maternal health work has evolved in the last few years, our driver diagrams now include better engagement with mothers and families as a primary driver. Why? Because it became clear that ignoring the perspective, knowledge, and expertise of women and their families who have been through pregnancy, labor, birth, and motherhood undermined the effectiveness, validity, and sustainability of our maternal health work. Fully engaging those with firsthand knowledge — what is often called “lived experience” — has been vital to the success of our maternal health work around the world.

For example, Parto Adequado, an initiative IHI started in 2015 to reduce unnecessary C-sections in the Brazilian health care system, began to test a new model for change to address health inequities. (Data indicates that black women account for 60 percent of maternal deaths in Brazil despite representing only 25 percent of the population.) Building on the successful initial phase of the project, the new model centers on women’s lived experience because we learned that scientific evidence was not enough to build lasting networks of trust with the women the initiative was meant to help. We realized we needed to respect what women had to say and offer them positions of leadership to increase the project’s impact.

Saying that you’re going to improve patient engagement and doing it, however, are two different things. The reality is that many improvement teams don’t know how to engage patients and learn from their lived experience.

With some failures along the way, the Parto Adequado team continues to learn some very important lessons about earning trust and building equitable health improvement movements that we believe can apply in any setting:

  • Never assume you know more than the people you are trying to help. It’s important to use evidence-based practice as the foundation of an improvement driver diagram. In Parto Adequado, we’ve also prioritized learning how our tests and changes are affecting mothers and their experience of care. (We include this in the “study” part of our PDSAs.) We continuously incorporate what we learn from mothers into our improvement efforts.
  • Take time to build trust with community partners. Develop relationships with activists and patients with lived experience. Be respectful and humble about learning their history so you understand the progress they made before you started working with them. In Parto Adequado, patients and activists taught us that racism plays a huge role in maternal outcomes in Brazil. Hearing directly from black mothers about their experiences in the health system has been crucial.
  • Incorporate people with lived experience into your leadership. Make room on your leadership committee for people with firsthand knowledge of the care you’re trying to improve. Co-design roles with them that have real decision-making responsibilities. Equitably distribute power to avoid tokenism. Help patients act as connectors to the community.
  • Build trust based on authentic relationships, not transactions. Use tools such public narrative to help people share their personal stories and authentic selves. You can’t create a movement for change without humanizing your work and learning to listen to the stories of struggle and trauma that build urgency. In Parto Adequado, we focus on building experience-based design skills using psychology of change tools. We use tools — such as emotional mapping, public narrative, and one-on-one meetings — to stay centered in the experiences of those that most need systemic change.
  • Be honest about your team’s own anti-racism journey. This is critical and often painful, but necessary to make progress. For Parto Adequado, our first meeting with black leaders and activists brought up embarrassing racism within the internal leaders of our project. For example, our first meeting with black community leaders did not go well because members of our project team made micro-aggressive comments, including a suggestion that black women did not feel as much pain as other women. This forced us to realize we weren’t ready to meaningfully engage with community partners. We decided to raise the consciousness of our team about the history of systemic and structural oppression in Brazil. This was necessary before attempting to reengage with humility and full commitment to anti-racism work.

Building improvement projects centered in the patient is difficult. (The more humans we add to a challenge, the more complicated it gets!) But without those with lived experience informing and leading the work, we miss the opportunity to truly create transformational change.

Santiago Narino is a project manager for IHI’s Latin America Team.

You may also be interested in:

IHI's Latin America Forum on Quality and Safety in Healthcare (October 13–16, 2019) in São Paulo, Brazil

Equity sessions are a part of IHI’s National Forum this December.

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