Patients and Pricing — the benefits of including patients in pricing discussions — insights from an ICER review — HTA roundtables

No pharma industry meeting agenda would be complete without the topics: patient-engagement, patient-centricity and oftentimes pricing.

Today’s installment of my recent interview with Suz Schrandt, Director of Patient Engagement at the Arthritis Foundation will focus on these topics and more. Including a key question:

What can pharma learn from car manufacturers? 

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Last week I shared the first installment of my interview with Suz Schrandt,Director of Patient Engagement for the Arthritis Foundation. You can find the newsletter here if you missed it.

Since being diagnosed with a rheumatic disease as a teenager, Suz Schrandt has been passionate about ensuring that patients’ lived experience, and unique knowledge about living with a disease is taken into account at all levels when healthcare decisions are made in research, development, clinical trial design and beyond.

In this installment, I will share our conversation on patient-centricity and the perception that patients want access to any therapy no matter what the cost.

Isabelle: You mentioned that you are active in areas included devices, HTA and valuation conversations. Can you tell me more about patients engagement in HTA and valuation conversations?

Suz: In the past, I’ve found that there has not been much patient engagement in the health economics and health insurance space. However, we are starting to see more willingness and indeed interest in partnering with patients. For example, I will be speaking on a panel about patient engagement at the European conference of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), in November in Barcelona. And I’ve served as the chairperson for ISPOR’s North American Patient Roundtable since early 2017.

Isabelle: Why do you think payers or health economists may have been reticent to engage with patients regarding pricing in the past?

Suz: There seems to be a misperception that patients want access to any therapy no matter what the cost is. However, I would have to ask, where is the evidence that this is the case? In some cases, patients or parents might be desperate and cost-agnostic, but many patients are very aware of the cost, both out of pocket and to the “system”. Employees working for big companies may be somewhat more shielded, but employees working for medium-sized and small companies are very aware of the cost.

Isabelle: Have you been involved in any pricing and value discussions or HTAs?

Suz: In the US, ICER really serves as our HTA body. Last year the Arthritis Foundation gathered a wealth of patient insights for an ICER review on RA biologics. This patient-provided information really contributed meaningfully to the conversation. Several other countries have involved patients in HTA boards but it is relatively new for the US. I’ve also participated in an HTA roundtable as part of ISPOR’s 2018 international summit as the only patient representative.

Isabelle: In general how do you feel about the allocation of healthcare funds? Are there areas where you feel resources could be used more wisely?

Suz: I worry, and many health policy experts do too, about our focus on quantity over quality. This can be particularly important with end-of-life care. Scholars point to the amount of money we spend to extend life but not to provide quality. 

Isabelle: What do you think when you read a companies’ mission statement, and they speak of patient-centricity?

Suz: I would have to say, that sounds good, but prove it. As an industry, pharma companies make products for patients, so it’s easy to think of them as patient-centered. After all, without patients, there would be no industry. Being truly patient-centered means demonstrating it as a company, showing in detail how patients have been engaged and involved as partners and advisors. However, in general, the healthcare industry still has a long way to go. 

If you think about it in any other industry you start with the consumer. For example, car manufacturers spend time and money researching how body mechanics should dictate the way interiors are made.

In many areas of healthcare, we don’t partner with patients at all. That said, there are some companies doing this right. One conference that showcases leaders in this field is Patients as Partners. Conference presenters show how they involve patients throughout the entire medicines development life-cycle to drive greater efficiencies in clinical research leading to drug discoveries that really matter to patients. So, there absolutely are companies who are doing this right.

Isabelle: How do you think that what the patient needs and the patient-experience can be made more easily accessible to healthcare professionals so that they can integrate that knowledge into their work?

Suz: In your email requesting an interview, you used the word patient-experience, that throws up a flag for me because it is not the same thing as patient engagement.

Patient Engagement is partnering with patients in any manner of healthcare or research activity so that patients can improve the system that serves them.

Patient experience—to me anyway—relates much more to “satisfaction”. For example, in the US we have a scoring system, the HCAHPS (author’s note: the Hospital Consumer Assessment of Healthcare Providers and Systems) which is a patient satisfaction survey required by CMS (the Centers for Medicare and Medicaid Services) for all hospitals in the United States). The Survey is for adult inpatients, excluding psychiatric patients). It helps define how Medicare determines payment. And while the survey touches on some “nice to have” elements of a hospital stay—comfort/cleanliness of the room, how good was the food—it does not ask about how my health outcomes were. (We manage that by penalizing hospital re-admissions but only for specific conditions or complications.) In my case, I experienced a medical error prior to and following a wrist replacement surgery that resulted in a five-day inpatient stay. Nobody asked me about my outcomes in the HCAPS.

While It’s nice to know about the condition of the hospital room or the meal choices the hospital offers I want to know, were the patients better off when they left the hospital than when they were admitted?

End of the second installment. 

If you enjoyed this second installment of my interview with Suz Schrandt, Director of Patient Engagement at the Arthritis Foundation, make sure to sign up for the newsletter here, update your preferences, so you don’t miss the last installment which will Suz’s experience of medical information provision and what her thoughts are when a healthy conference presenter says to the audience “we are all patients here”.