Driving Equity in Serious Illness Communication and Care: a Q&A with Stacey Downey and Erik Fromme

In a first-of-its-kind event, Ariadne Labs will host a virtual summit June 13-14, 2023, on improving equity in serious illness care and communication. The CME-eligible Summit will feature workshops and presentations from national experts in serious illness care, palliative care, health equity, and more. Participants will also gain early access to the Serious Illness Care Program’s all-new digital learning modules, and a limited number of seats will be available for a new simulation-based training in how to use the Serious Illness Conversation Guide.

The two-day event offers an opportunity for serious illness care practitioners of all backgrounds – including physicians, nurses, social workers, and more – to learn more about the latest research in making high-quality serious illness care accessible to all and bring practical tools and guidance back to their organizations.

In an interview, Course Director Erik Fromme, MD, MCR, FAAHPM and Stacey Downey, MA, Associate Director for Program Management, Serious Illness Care Program at Ariadne Labs shared more about the goals of the Summit and what they hope people are able to take away from it.

“It is a unique summit; I’ve never heard of anything quite like it,” said Fromme, who is Faculty at Ariadne Labs for the Serious Illness Care Program and a Palliative Care Physician at Dana-Farber Cancer Institute. “I can’t think of another conference that focuses so specifically on serious illness communication in palliative care.”

Q: Why did you want to focus this virtual summit on equity?

Erik Fromme: Our vision is that every person affected by serious illness would feel known and cared for on their own terms. Our program has been successfully scaled, but I would say that reach has not been as effective for underserved communities. It hasn’t reached organizations with fewer resources. We’re seeking to correct that if we can. Putting equity in the center of our summit made sense. It’s a way of holding ourselves accountable and doing our best to ensure that our program reaches the people that we’re really trying to reach.

Stacey Downey: Serious illness care is about centering patients, hearing their voices, and empowering their choices. To realize this vision, we need to prioritize equity. 

Q: Why hasn’t the Serious Illness Care Program reached more people, particularly people of color?

EF: The fundamental issue is trust: the greater the difference between the health professionals and the patients and families that they’re caring for, the more difficult it can be to communicate effectively. Can you trust the health professionals who are taking care of you? Can you trust the care that you’re getting? Can you trust that the care you’re getting is the same that you know everybody should be getting?

Q: How will the summit address these issues?

SD: The Serious Illness Care Program team has spent the last few years researching the barriers to equity with our program, including language. We’ve now compiled that research and updated our digital content, and at the Summit we’ll be launching a fully self-instructional, on-demand program that includes an avatar-based simulation training on how to have serious illness conversations. We’re providing free access to participants, which means that participants will walk away from the Summit with practical tools and resources they can take back to their organizations. We’ll also be launching our updated Serious Illness Conversation Guide and sharing more about how we’ve worked with clinicians and patients to make sure the foundational language we’re using is accessible to everyone. 

We’ll have multiple partners and speakers sharing their perspectives on how to actually promote equity in serious illness care. We’ve learned over time that there is no single “right” way to implement our program. We’ve developed the tools that are going to help you, but there are different ways to apply those tools. We’re looking forward to giving participants the chance to hear different perspectives on how to actually bring equity into focus at their own organization.

Q: Can you explain the avatar-based simulation training?

SD: In a traditional format, the skills portion of the Serious Illness Care Program is led by an instructor, a clinician, who has done in-depth training with us. They are able to teach four learners at a time. That is a wonderful way to teach people, but it is limited in its scalability. So what we have done is translate all of what we know about that instructor-led training into an avatar coach, which will be interactive with the learner. So not only will learners be able to learn from the didactic modules as they do now but they will actually be able to practice with the avatars in a simulation environment.

EF: Before, if a health care system wanted to implement Ariadne Labs’ Serious Illness Care Program you pretty much had to pay a fee and partner with us to get access. At the summit, we’re actually giving it to everybody who attends, and going forward, we hope this training format makes it much more accessible for everyone looking to improve serious illness care.

Q: Why did you decide to make this a virtual summit?

EF: We would much rather interact with people in person, but by making it virtual, it is more equitable, and people from all over the world can potentially attend. We didn’t want cost of travel or extra time away from work to be a barrier for people who wanted to attend. 

Q: What will participants take away from attending the summit?

EF: I hope that they’ll walk away feeling really inspired, and that they’ll feel that they are part of a community and  a movement that is trying to make every person affected by serious illness feel known and cared for on their own terms. I think that’s an extremely powerful vision.

SD: We want to ensure that our community grows not just vertically, but also horizontally, and that we bring in lots of different types of providers and clinicians who serve those who have serious illness.

Over the next few weeks, we will be sharing interviews with several of the conference speakers, who will talk about what they’ll be presenting at the conference, and what they’re most looking forward to. Stay tuned for more! Learn more about the Summit and register here.