What pharma could learn from car manufacturers about patient engagement. Interview with Suz Schrandt, Director of Patient Engagement at the Arthritis Foundation

A common goal for teams in the healthcare industry is how to be more patient-centric. It’s an important question. 

Putting patients at the center of everything we do sounds good. But how do you ensure that your plans will deliver on your promise? 

Read on as I share some ideas from an interview with Suz Schrandt Director of Patient-Engagement at the Arthritis Foundation.

Yesterday, I interviewed Suz Schrandt, Director of Patient Engagement for the Arthritis Foundation.

We talk about patient-centricity, patients’ portrayal in promotional materials and information, that only pharmaceutical companies have,
but that patients would love to get access to. 
Unexpectedly, Suz also tells me what the healthcare industry could learn from car manufacturers.

Suz’ passion for improving healthcare and patient engagement in healthcare decision-making, stems from being diagnosed with a rheumatic disease aged 14. Ever since she has been engaged in ensuring that patients’ lived experience, their unique knowledge of living with a disease, is taken into account when decisions are made in research, development, clinical trial design, drug valuation and healthcare in general.

Since being diagnosed Suz has been active in many patient-engagement, patient and clinician education and advocacy initiatives. In a previous role as Deputy Director of Patient Engagement for the Patient-Centred Outcomes Research Institute (PCORI), Suz was involved in initiatives such as the Patient Engagement Rubric, a guide on how to involve patient and stakeholder input into every aspect of the research process. She is a Patient Instructor at the University of Kansas School of Medicine and involved in continuing medical education as a Curriculum Steering Committee Member and Patient Spokesperson for the Rheumatoid Arthritis: Primary care initiative for Improved Diagnosis and outcomes (RAPID) initiative. Suz currently serves as the Chairperson for the Patient Roundtable for the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and a regular presenter at conferences.

The first time I see Suz she is a keynote speaker explaining why it’s critical to include patients in all discussions that will ultimately affect their treatment. She uses the example of patient-reported outcomes:

“Patient-reported outcomes are wonderful. However, when patients are not involved in defining what outcomes should be measured, you risk measuring outcomes, that patients don’t care about….”

Suz speaks to the need for patient-engagement, using her experience as a patient with a chronic disease. She says we need to move from expert-centered health-care to truly patient-centered healthcare. And she explains why captivating the audience with passion and honesty. Suz Schrandt is both a patient and a trained lawyer and perhaps this combination is what enables her to craft her message with such precision.

Suz asks the audience “imagine what it feels like to be told you failed the drug? When the reality is surely that the drug failed you?

As she shares with us, that she is currently taking the last available biologic for her disease, and her concerns of what will happen if that fails. The room is silent and I have tears in my eyes, and I am not alone. 

That was two years ago. Today I’ll be sharing the first installment of my interview with Suz, which is all about patient engagement, patients as educators and the patient-physician relationship. To receive the installments on HTA and pricing as well as patient-centricity, please sign up to the newsletter below. 

Isabelle: Thanks so much for having the time to speak with me Suz. Can you tell me what you are currently working on?

Suz: Lovely speaking with you too. I’m involved in many different activities. I am working on initiatives to get patients involved in clinical trials as part of the research team early on. It is critical to involve patients at stages of clinical development. However, I’d recommend involving patients as early as possible to ensure that any development programme is focused, from the start, on outcomes that are relevant to patients.

Isabelle: What other activities do you think patients should be involved in?

Suz: Well, I think patients need to be involved in any area that ultimately impacts their healthcare. Instead of just involving them in clinical trials and drug development, I think we need to get patients involved across the entire paradigm of healthcare in the US; including drugs, devices, HTA and value conversations. My focus is on patient engagement across the board. Ultimately, anywhere there is an important healthcare conversation happening, we are trying to put patients in those rooms. In general, I think it would benefit all stakeholders if patients were more engaged in clinical training at pre- and postgraduate levels.

Isabelle: You’ve been a Patient Instructor with the Patient Partners Program at the University of Kansas School of Medicine. Can you tell me about the programme and your experience with students and primary care providers?

Suz: Yes, of course. I was working as a patient instructor for 10 years, even before I was doing legislative work, I had been doing clinical training on the side since 1995. The program has been around since the mid-1990s and while the main funding source ended in the early 2000s, several medical schools still host variations of the original program. The original curriculum was a full-body joint exam, led by trained and certified patients (with rheumatic conditions), to not only teach learners about early diagnosis of inflammatory arthropathies but also to understand from the patient perspective the vast impact of chronic disease on function and quality of life. The program helped enhance learner’s abilities to communicate with patients and take an informed and accurate history. Typically the learners are 1st, 2nd, or 3rd-year medical students but evolutions of the program are now being used in pharmacy, dental, and nursing schools and other allied health professional training.

Isabelle: What is one of the key benefits for your students? 

Suz: I’ve found that the most important thing was getting them to get to think about functionality. For example, I will ask them “You have seen my ankle. What do they think the functional limitations are?” And then I tell them what I really have as limitations. For example, driving and walking up the stairs. We then go on to discuss what a treatment schedule could look like.

Isabelle: What type of feedback have you received from your students?

Suz: Students often told us they loved this approach because they say they really get a better understanding of the disease and what is important to me as a patient. However, I also teach CME/CE courses for primary care providers including MDs, DOs, NPs, RNs, PAs, etc. We show them that if they suspect RA they need to send the patient straight to the specialists because once there is joint damage it’s permanent, and there is no recovering from it. So the earlier a patient is diagnosed and treated the better.

Isabelle: What feedback have you received from primary care providers you have trained?

Suz: Well the primary care providers say it is a very different experience hearing from a real-life patient-expert, who has been trained to teach them. They appreciate having a direct and tangible experience in a teaching environment. I do a lot of Medical Education.

Isabelle: What was your experience being diagnosed as a patient?

Suz: Well I was really extremely lucky. Three weeks after they suspected I had RA they diagnosed me with polyarticular JIA. So it was really fast. My primary care physician knew she couldn’t manage it and sent me straight to the rheumatologist. Since then I have had 4 joint replacements and I will need more. However, I know many people who lingered for as many as 10 years without a diagnosis and they accrued irreversible joint damage during that time. If you compare me to them, you can see how much outcomes vary depending on the promptness of your treatment.

Isabelle: You are touching on the patient-physician relationship. What is the key to a good relationship?

Suz: My rheumatologist is phenomenal. He is kind, his presence and attitude made me feel comforted and positive, even when I was not doing well. For example, I was considering quitting my job because I couldn’t function. He was treating me and, of course, had no way to ensure that the next thing we tried would work. What I love about him is that he is honest and authentic. If a treatment is not working, he just says, we will try this for now, and if it doesn’t work, we will try something else. Ultimately, the fact that I can trust him to be honest with me is key.

If you enjoyed this first excerpt of my interview with Suz Schrandt, Director of Patient Engagement at the Arthritis Foundation, make sure to sign up to my newsletter so you don’t miss the next two installments on value, pricing and resource allocation in healthcare, as well as patient-centricity and patient-experience (HCAHPS).