Centering the Patient in Patient Engagement

By Ronnie Tepp -

Best Practices for Reaching, Educating and Engaging Diverse Communities in Clinical Trials through Strategic Partnerships

There is a lot of buzz around patient engagement and what it means to have patients as partners. These conversations usually involve patients, the organizations that serve and represent them, and industry. Topics are focused on ways to ensure that patients are helping to set research priorities, inform clinical trial design, and promote awareness of trials. And all towards the goal of improving health outcomes. But the problem is that these conversations usually involve the stakeholders who are already engaged in talking to each other.  

If we truly want to improve health outcomes for all, then we need to address the reality that many populations in this country do not participate in clinical research and, therefore, do not benefit from the treatments and therapies that result from advances in this research. These are the populations that need to be brought into the conversation about patient engagement so we can understand what it will take to reach, educate and ultimately motivate their communities to participate in research.

This is what the HCM team is doing in partnership with the NIH All of Us Research Program. This work enables our team to do what we do best – think creatively, leverage a vast network, deepen relationships and build trust, develop tools and training and move organizations and their communities along the journey that begins with awareness and ends with participation.  

Here are some of the best practices that have informed our work in reaching, educating and motivating communities underrepresented in research:

  1. Don’t be confined by traditional stakeholders. Resist the temptation to default to the ‘usual suspects,’ such as patient advocacy organizations and traditional healthcare stakeholders. These organizations can be an important part of your equation but, in isolation, they are not the answer. Start with the populations you are seeking to reach, then map out their influencers and trusted messengers. Layer on top of that the channels through which they receive information. Think about where individuals within the community live and gather. Go deep into the community to understand the diversity within it.
  2. Take the long view.  The way in which you engage with individuals and communities will directly impact how well you retain them. Resist the temptation to skip over meaningful engagement to go straight to recruitment. Take the time to build trust and educate them about medical research and what it means to participate in a study. If historical transgressions are a barrier to participation, support community conversations and help to facilitate honest conversations.  
  3. Use a variety of engagement models. Let the community educate you on how they engage their communities on other issues and collectively discuss and develop strategies that build on their strengths and successful models. Use their Best Practices.
  4. Give your partners space to define value. Communities, and individuals within them, define value differently. Be open to hearing what different communities value and then develop tools, content and mechanisms to support them with this in mind.
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