Patient Focus at DEM2019 with Sue Sheridan, Director of Patient Engagement at SIDM

Sue Sheridan

The Diagnostic Error in Medicine 12th Annual International Conference (DEM2019) will take place in Washington, D.C. from November 10–13, 2019, focusing on the theme of Shaping Policy, Improving Practice. Patient inclusivity is a core value that the Society to Improve Diagnosis in Medicine (SIDM) holds, evident in the work that it does, as well as the DEM conference. We sat down with Sue Sheridan, Director of Patient Engagement at SIDM, to discuss the value attendees get with the engagement and participation of patient leaders in diagnostic quality and the future of patient engagement at DEM.

SIDM: Tell me a little bit about your role as the Director of Patient Engagement at SIDM. What does your work entail at the DEM conference?

Sue: My role at SIDM focuses on integrating the patient and family perspective into all that SIDM does. I do this by making sure there is patient involvement in the research, medical education, our practice improvement, and in our awareness and policy work. These four areas are SIDM’s strategic priorities, and it’s very important that the patient perspective is represented in all of them so we can make sure we’re meeting patient needs. My role at DEM is to ensure that the programs are inclusive of and focused on patients and family members who have been adequately prepared and trained to participate as full members in the design, delivery and implementation of the programs.

SIDM: How many patients usually attend each year? What is the biggest benefit patients receive from attending the DEM conference and joining the community?

Sue: The patient summit usually reaches around 60 patient participants, but this is just the pre-conference. We’ll likely have 40 patient participants at the full conference this year, and hope to have more in the future. In the past, grants have helped bring patients in, so we’re looking to obtain more of these grants and scholarships moving forward.

The largest benefit that patient attendees receive is the opportunity to meet people like them who have been affected by diagnostic error These attendees have experienced great losses, but have gained spirit and passion to make a difference and ensure that others do not have to experience such losses. It’s not only healing, but gratifying for them to be part of a comprehensive movement and to see SIDM help improve the process in partnership with patients and family members. The whole community is brought together by the common vision of wanting to make a difference. It offers hope.

Throughout the conference they get a more in-depth look into the difference sectors of diagnostic error, like research, and identify what their role is in improving diagnostic quality and safety. They also get to meet clinicians and researchers who are eager to make a difference and help bring that patient perspective into their work. The presence of these patients contributes to all the other stakeholders by changing the dialogue. While the patients get many benefits from attending, the benefit other attendees get from hearing from patients is invaluable. Patients enhance the DEM conference as a whole and are giving just as much as they’re receiving, if not more.

SIDM: How does the conference include patients in its sessions and panels?

Sue: Patient engagement is sprinkled throughout the sessions and panels as a whole. There’s the pre-conference Patient Summit, but also workshops, plenaries, and breakout sessions. The pre-conference Patient Summit is very focused on topics of interest to the patients and highlights how patients are engaged in diagnostic improvement efforts. We have patients, researchers, clinicians, and medical students in attendance, as well as well-known authors or speakers. We also align the theme of the summit with the theme of the DEM Conference. For example, the theme this year is shaping policy, improving practice, so we’re going to highlight disparities and examine policies that can be generated with our work. In addition to myself, we have patient advocate Helen Haskell on the planning committee.

Something we’ve done in the past and plan to do again in the future is invite a number of patient and family member leaders to the conference to focus on capacity building and partnerships in the various priority areas. At DEM2018, we invited 20 patients and family members from key patient organizations and Patient and Family Advisory Councils to participate in a training program to prepare them to be patient partners in the design of diagnostic research. They then presented a plenary at the DEM using their personal stories to identify risk points in the diagnostic process that could serve as future research topics and questions. This year we’ll be inviting patients to join us at DEM and training them to effectively advocate on the hill. On Wednesday, we’ll join all the other conference participants who have registered for Hill Day and all advocate together.

SIDM: Looking at the DEM2019 schedule, which sessions might be most exciting for patients to attend and why?

Sue: The Patient community will enjoy the Pre-conference Patient Summit that will feature Danielle Ofri, author of “What Patients Say: What Doctors Hear,” as well as other speakers that will address disparities in diagnosis.

Also, “Pedal to the Metal: Patients as Change Makers” is going to be an inspiring plenary for patients this year, as it’s focused on patients, motivated by their own experiences with diagnostic error, and how they’ve partnered with other stakeholders, to change state and national policy. For example, the panel will include the story of a mother and father who lost their son to sepsis and has successfully implemented state policy regarding sepsis in New York. There’s also a mother who lost her son to a common newborn congenital heart defect and was able to successfully implement legislation in Pennsylvania to screen all newborns to diagnosis the condition. We also have a former PA State Representative who partnered with patients and family members who had experienced harm from the failure to communicate significant abnormalities in their imaging results. She helped get the Patient Test Result Information Act passed, which requires notification to the patient regarding abnormal imaging results.

There’s also a session called “What Does Age, Sex and Race/Ethnicity Have to Do with Diagnostic Errors and Diagnostic Disparities?” about actively creating solutions in partnership with patients, clinicians, researchers and others to help prevent diagnostic error due to bias due to visible factors. Additionally, “Closing the Communication Loop: Using Health IT and Patient Engagement to Prevent Diagnostic Errors” has a large focus on the patient perspective. There are many exciting sessions to look forward to that affect the patient and provide opportunity for them to contribute.

SIDM: Is there anything else you’d like to share patient engagement about SIDM or DEM2019?

Sue: Overall, SIDM plans to continue to seek new grants to help us increase patient and family engagement at the DEM conference. Patients and family members provide fresh and unique perspectives that can contribute to innovative patient centered solutions. We are very pleased with what we’re currently doing, and recognize the value of fully integrating the patient and family community into the conference. SIDM is committed to advancing and growing patient engagement at the DEM.

You can still register for DEM2019! Start planning your schedule and register now.