Improve Your Advocacy Skills at DEM2019 with Patient Advocate Susie Becken

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. The DEM conference, and the Society to Improve Diagnosis in Medicine (SIDM) as a whole, are known for their inclusivity of and placing importance on involving patients in the process of reducing diagnostic error. To learn more about how DEM includes patients, we sat down with patient advocate, member of Kaiser Permanente’s Patient Advisory Council, and avid DEM attendee Susie Becken to discuss why she began attending and how other patients will benefit from attending as well.

SIDM: Tell me a little bit about your history with SIDM and the DEM conference.

Susie: When my son Chad, who was not a Kaiser Permanente patient, experienced a diagnostic error, there was a lack of that crucial patient-provider relationship, and he was misdiagnosed three times in one year. Now I ask myself, what if he received a more accurate diagnosis? After my son passed, I became a patient advocate, as I realized I had a new purpose in life, and I set out to make sure I do everything in my power to make sure no one suffers like my family did.

I later went on to formally become a patient advisor for Kaiser Permanente who then recommended that I participate in SIDM’s innovative project called Patients Improving Research in Diagnosis (PAIRED) that trained patients and family members to be partners in diagnostic research. This resulted in my attending DEM 2018 and participating in the delivery of a plenary session with other patients. At first I didn’t know what SIDM was about, but quickly learned that to them, patient engagement means patient empowerment. It was clear that SIDM feels that diagnosis is a team sport, and I want to be a part of changing that narrative in health care.

I was also asked to participate at the conference in 2018 with other Kaiser Permanente representatives to share a project about the development of a patient guide focused on helping patients and family members identify and communicate their symptoms in a more effective manner to their physicians. Once again, I was just so impressed with how SIDM refers to the patients before they refer to physicians and constantly reiterates how the patients are partners and their voices matter.

I’ve been practicing what I’ve learned at past DEM conferences when educating others and in my personal life. When my husband was hospitalized, I asked the three key questions that I had learned:

1. 1. What symptoms may not fit the diagnoses?
   2. What else could it be?
   3. What might we be missing?

The “we” in the third question is very important, because it is a “we.” The patient and the physician should always be a team.

The doctor was taken aback and informed me that no one has ever asked him that before, but I needed to know what we might be missing or what else this might be. I continue to use this strategy to advocate for myself, as well as for my friends and family.

I’ve found that this process of learning to partner with patients is new for physicians, but we need them to realize that patients are part of the process and this will help to improve diagnosis in the long run.

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

Susie: Every one of the sessions I attend, along with the collaboration within SIDM, impresses me. Last year, after delivering the story about Chad’s diagnostic error in the plenary to a room full of researchers, they came up to me and asked questions. It was amazing. They were so humbled, and this humility is not celebrated in the way that it should be. This humility is what makes physicians change their course of action when things aren’t going according to plan.

Also, the PAIRED patient partners were trained to evaluate posters and abstracts and actually participated in the scoring of the posters at the DEM. We impacted the decisions based on how well the posters and abstracts included the patient, and it was so wonderful of the organization to include us in this process.

SIDM: If you’ve taken a look at the DEM2019 schedule, which sessions are you most looking forward to and why?

Susie: I’m really looking forward to “Pedal to the Metal: Patients as Change Makers,” as well as “Closing the Communication Loop: Using Health IT and Patient Engagement to Prevent Diagnostic Errors.” I think these sessions are going to do a great job of demonstrating the importance of patient involvement. I always want to be able to walk away with new tools to make a difference, and I think these sessions are going to be a great opportunity to do so.

I think “Teaching, Communicating, and Teaching How to Communicate About Diagnostic Uncertainty” is going to be very interesting as well. I’m excited to hear what they have to say about the uncertainty aspect of diagnosis.

I’m also very much looking forward to joining SIDM, other patients, clinicians, and fellow DEM2019 attendees on Capitol Hill to speak out on issues important to improving diagnostic safety & quality on Hill Day. This is going to be a great opportunity to truly let our voices be heard.

SIDM: What the biggest benefit you receive from attending the DEM conference and being part of that community?

Susie: I really enjoy being a part of the collaborative team that SIDM embodies and knowing that I’m going to make a difference in the lives of others. I truly believe that partnering with patients is key to this whole diagnostic process, and I didn’t realize how essential that was until I started attending the DEM conference.

As the average patient, you assume that physicians are always the experts, but over the years, I’ve learned how important it is as a patient or patient advocate to partner with the physicians to get an accurate and timely diagnosis. This is evident in what happened to my son. He was a young adult who went in to see his physician and he didn’t question anything that he was told. Asking the three questions (what symptoms may not fit my diagnoses, what else could it be, and what might we be missing) is key to developing the necessary physician-patient partnership.

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

Susie: I’m so looking forward to DEM2019 because of the role I get to play in this process. The patient partners are going to be presenting and partnering with researchers, which is very exciting, and I’m also looking forward to attending the sessions.

In addition to my admiration of the overall collaboration within the SIDM organization, I applaud SIDM for leading the charge to improve diagnostic quality & safety, and I’m inspired by their goal to achieve “Better Outcomes Through Better Diagnosis.”

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