Q&A with Patient Advocate and IAS Keynote Speaker, Lilly Stairs

04/02/2018
lilly stairs

Lilly Stairs, keynote speaker of the 2018 Interdisciplinary Autoimmune Summit (IAS) meeting, has worked in the advocacy field for 10 years, starting in the anti-bullying sphere. After she was diagnosed with Crohn disease and psoriatic arthritis, she transitioned into patient advocacy and now serves as the Head of Patient Advocacy at Clara Health. Prior to her position with Clara Health, Ms Stairs worked for MassBio and implemented the #PatientDriven campaign to unite patients and health care professionals.

Ms Stairs is a board member for the American Autoimmune Related Diseases Association and works closely with other health care and biotech companies to help ensure their initiatives remain patient-centric.

She shared her thoughts on the IAS with The Dermatologist.

Q. Why did you become a patient advocate?

A. From the moment I was in the hospital bed, my dual diagnoses of Crohn disease and psoriatic arthritis instantly became my reason for being. In just 6 months, I had been diagnosed with 2 chronic illnesses I had never heard of in a disease category I didn’t know existed—autoimmune diseases. How was this possible? How were 50 million Americans living with an autoimmune disease, but I had never once heard of them?

Since that moment, I have become determined to raise awareness about autoimmune diseases in any way possible. Awareness leads to understanding, support, and, ultimately, more research. And we desperately need more research to drive the development of treatments and someday cures.

Q.  Could you elaborate on your role at Clara Health?

A. Clara Health is dedicated to helping patients find and enroll in clinical trials all while holding their hand throughout the process. As the head of patient advocacy at Clara, I help ensure that the patient’s voice remains firmly at the center of the company. I work closely with every team member across departments to ensure the product we are building is patient and caregiver friendly.

I have the distinct pleasure of running our patient programming, including the Breakthrough Crew, a group of patients, caregivers, and health care professionals dedicated to raising awareness about the power of breakthrough research and clinical trials. I also work closely with our head of marketing to develop growth strategies and run our Patients Have Power initiatives, including a podcast where we chat with patients about chronic illness and the hottest health care topics.

3) Why did you decide to become involved in The IAS meeting?

A. When I was asked if I would be interested in keynoting IAS, I was elated at the opportunity to open a dialogue with physicians on ways to strengthen the doctor-patient relationship, particularly for patients living with multiple autoimmune diseases.

It is exciting to see specialists from across disciplines coming together and recognizing autoimmune diseases from a holistic perspective, and I am honored to be included in this new wave of care.

4) What do you intend to share in your IAS keynote address?

A. My presentation will focus on 3 core areas: illuminating patient burdens that physicians may be unaware of, offering tangible resources and solutions to help providers better support their patients (while, of course, being mindful to ensure this does not add administrative burden to the physician’s plate), and understanding the patient’s perspective as it relates to true shared decision-making.

5) Do you have any insights as a patient that you would like to share with physicians who treat patients with immune-mediated diseases?

A. There are 2 insights that come to mind, which I will delve further into in my presentation. The first is to ask your patients the following question:

“How is your disease impacting your life beyond your symptoms? My team and I are here to help you in any way we can.”

As a health care provider, you and your team are uniquely positioned to point patients in the direction of resources they might not even know they needed. Not only will your inquiry be appreciated, but it will help you tap into the empathy that many patients crave in a health care provider.

The second insight is to see beyond shared decision-making as a buzzword. Many autoimmune patients have been misdiagnosed and are frequently told “it’s different for everyone.” Therefore, they have likely done quite a bit of their own research and want their voice heard when making care and treatment decisions.

 

The 2018 Interdisciplinary Autoimmune Summit (IAS) will be held at the Westin Waterfront in Boston, MA from April 27 through April 29. For more information and to register, please visit http://www.iasmeeting.com/.

For more information about Ms Stairs, please visit www.lillystairs.com.