Optimizing the Patient Perspective

As medicine has evolved, so has the role of patients in their medical care. Today’s patients are more active and involved. They have questions and seek answers — from family and friends, medical professionals, online communities, social media, and yes, Dr. Google.

Identifying and responding to patients’ questions and concerns about their diagnoses and care plans can go a long way toward instilling confidence in their treatments. Increasingly we find that when it comes to the development and introduction of new drugs and medical interventions, it’s important to factor in the patient perspective.

From the community: “…I research the hell out of anything that comes my way. I seek out not only clinical/research data, but also anecdotal data, such as the personal stories found on the Inspire site and other support group sites. I talk to doctors, nurses, and other medical staff when I can… For personal medical issues, I take all our  questions to our doctors. I do not let them leave the room until they answer all my questions, and sometimes my typed questions are three pages long. If they don’t know the answer, I want them to refer me to someone who does...” – Inspire member

Discovering what patients want in treatments

Patient perspective was a key focus of the annual conference held by the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) in 2021. ISPOR bills itself as the Professional Society for Health Economics and Outcomes Research (HEOR).

During a panel discussion about “Qualitative and Quantitative Applications of Incorporating the Patient Voice into Value Assessments,” Melanie Whittingham, PhD, associate director of health economics at the Boston-based Institute for Clinical and Economic Review (ICER), shared how engagement with patients and patient groups shifted pharmaceutical companies’ views on what people living with multiple sclerosis (MS) wanted from their medications.

An ICER review revealed differences between the primary focus of the U.S. Food and Drug Administration (which was reviewing a medication for approval), and patient needs or wants. The FDA’s focus was on the drug’s efficacy at preventing or reducing MS relapses. But the ICER assessment showed that relapses weren’t a top priority for people with MS. Their main concern was whether the drug could slow disease progression. They wanted medications that could delay the accumulation of long-term functional disabilities that negatively impacted their ability to complete daily tasks, work, and enjoy life.

Dr. Whittington shared how factoring in the patient perspective changed the pharmaceutical company’s approach after their drug received FDA approval. “So when the cost-effectiveness model was built to judge what a fair price would be we used functional outcomes rather than relapses, which actually changed the ranking of which drugs worked best for certain patients,” she said.

From the community: “Read, research, ask questions, check doctor ratings, their education, gut feeling. Finally it comes down to who do you trust? I don’t always like my doctors, but I must feel they understand where I am coming from, and what I want and don’t want to have happen. I need to be sure my thinking is not being driven by my depression or by fear, and is made based on what I know at the time. Then I have to let go and trust. I will try complementary treatments if I feel the likelihood of harm is minimal. But in the end I want quality, not quantity. I have spent a great deal of my adult life suffering, and find myself unwilling to put up with a lot more.” – Inspire member

Identifying the patient perspective on treatment costs

Information from the National Health Council (NHC), a patient advocacy organization that drives patient-centered health policy, indicates that patient perspectives are often missing from value assessments. This oversight means that treatment costs often fail to take into account out-of-pocket patient expenses like home modifications to help people get around safely and the cost of childcare so patients can attend medical appointments.

In a separate case study, researchers from Patient-Driven Values in Healthcare Evaluation (PAVE), a collaborative effort funded by the Pharmaceutical Research and Manufacturers of American (PhRMA) Foundation, collected patient perspective information about chronic obstructive pulmonary disease (COPD). Their findings showed that people with COPD were more concerned about their physical abilities than the results of lung function measurements that doctors use to assess disease severity.

Additional information from patient advocates also found that out-of-pocket treatment costs were a big concern for patients. An earlier analysis that didn’t consider the patient perspective didn’t identify this very real patient concern or explore how costs impacted a patient’s treatment decision.

From the community: “I am curious as to if many people base medical decisions on how much it will cost them out of pocket? With the high premiums and copays, does it affect your decision on tests or procedures your doctor orders or suggests that you have? … If you pay for prescriptions out of pocket do people price compare? … All medical care prices are skyrocketing with more and more being put on us consumers every year, so I am just curious as to how people deal with this and how much it affects your decisions to keep your costs down…” – Inspire member

How Inspire captures the patient perspective to help you

Inspire has access to more than 2 million patients and caregivers who share their perspectives in our communities. We offer a number of services that tap into this collective resource to help pharmaceutical HEOR teams tailor communications that resonate with their target audiences.

These services include real-world voice analysis, surveys, and interviews that reveal the patient voice. We help you understand the patient perspective on treatments, diseases, and clinical trial opportunities. Take a look at some of the many ways we can help you.