Bringing the Patient Voice Into Benefit Design

Diverse populations have diverse needs, and that's why NPC Chairman Steven Romano says benefit design and coverage policies should start with the patient in mind.

As Chair of the National Pharmaceutical Council’s Board of Directors, last month I had the privilege of moderating a member discussion with two leaders who head diversity, equity and inclusion initiatives at their respective biopharmaceutical companies. The conversation was wide-ranging, considering the words we use, the actions and gestures we make, and living up to our promises to foster career growth and promote people from all backgrounds. It’s a similar philosophy that should be guiding the health care sector’s engagement with patients and patient organizations. We need to be inclusive, listening and incorporating patient insights into everything that we do, especially when it comes to improving health and well-being.

Patient engagement doesn’t begin with FDA approval of a treatment. It spans the health care continuum –  from researching diseases, to including patients in clinical trials, gaining FDA approval, delivering medicines, paying for the treatments, and ensuring ongoing support for both patients and caregivers.

One area where a stronger patient voice is needed along this continuum is in benefit design. A peer-reviewed study from the National Pharmaceutical Council and Tufts’ Center for the Evaluation of Value and Risk in Health found that none of the insurance plans they studied reported having a formal process for including patient input into coverage policy development. Sadly, it shows that consumers have little or no say in shaping their insurance coverage and that there’s a disconnect between coverage plans and the patients they cover.

It's likely coverage decision policies would look very different if patient input were fully considered. Individual patients have different needs, different reactions to treatments and even different desired health outcomes, and these differences are rarely reflected in health benefits that are designed for “average” patients. Barriers like step therapy, which can delay access to needed treatments, often add unnecessary costs to the health care system. And high-deductible health plans, with high out-of-pocket costs, can deter lower-income workers from getting their prescriptions and maintaining their treatments.

Each of our member companies continually take action to ensure the diversity of their patients is taken into account in the work we do. For instance, at Mallinckrodt where I hail from, we believe that inclusion and diversity are core to our vision to improve outcomes for patients with severe and critical conditions. Our employees reflect the diversity of our patients, and their perspectives help us to better understand and meet the needs of our patients. From proactively seeking to engage diverse patient recruitment and retention in our clinical trials, to promoting awareness of health disparities in our supported therapeutic areas, Mallinckrodt is committed to the spectrum of patients we serve.  That commitment extends to educating patients about their disease and available treatments by providing accessible, customizable educational materials, including web-based programming, publications, training with nurse educators, reimbursement support and co-pay assistance, and other resources.

Ultimately, we all want to ensure that patients have access to appropriate therapies. To do that, benefit design and coverage policies should start with the patient in mind because diverse populations have diverse needs.

Steven Romano, MD, is Executive Vice President and Chief Scientific Officer, Mallinckrodt Pharmaceuticals, and is serving as Chair of NPC’s Board of Directors for 2021-2022.