What Does “Patient-Centricity” Mean?

You may have seen articles and posts in the lung cancer community lately referring to the need for “patient-centricity”. “Patient-centricity” has become a catch-phrase, especially with respect to discussions taking place in the pharmaceutical industry.

What does “patient-centricity” mean?

What does “patient-centricity” even mean in an industry like pharma with a mission of developing medications and medical products for patients? How can that NOT be patient-centric? According to a recent study that developed a definition of this phrase, patient-centricity means “putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.”¹ The keywords in this definition are “open and sustained.”

Patient-centricity is about a lot more than just making sure patients have information about and access to a product, although these are very important elements. Instead, true patient-centricity involves two-way communication, not just communication from the pharmaceutical company to the patient. It requires viewing the patient and the patient advocate as a partner, not just as someone who provides feedback when needed. It’s about involving the patient in every step of the research and development process, from initial discussions to determine the unmet needs that lead to a research question, through clinical trial development, to the dissemination of trial results, and the incorporation of real-world data. It’s working with patient advocacy groups to figure out new models to make sure patient representatives are proactively involved in research, not just reactively asked to provide opinions or “inspirational stories.”

Patients can be valuable research partners

I have worked with a lot of pharmaceutical companies as a patient advocate over my years since being diagnosed with lung cancer. I have noticed a shift in this relatively short time towards the increased realization that patients can be valuable partners in research. More and more companies are listening to us and our opinions as health care consumers. This has led to a focus on treatments to address unmet needs, broadened eligibility criteria for clinical trials, and increased inclusion of patient-reported outcomes and real world data when analyzing the impact of a medication on patients.

However, a lot of work still needs to be done! Companies often have risks from legal, compliance, and regulatory issues that create “barriers to truly integrating the patient perspective into every aspect of their product development and commercialization process.”² They also need support from upper management, because if they engage patients, they need to have buy-in from the top in order to implement any suggested changes. Otherwise, patients will end up frustrated that after sharing opinions and time, nothing ended up happening.

Let's talk about compensation

It’s also important that patients and patient advocates be compensated for their involvement in pharmaceutical activities, just like any other engaged participant. If you are asked to be part of an activity and compensation is not mentioned, it is definitely appropriate to ask. “All parties should be transparent about any compensation arrangements. At a minimum, a written agreement should have a clearly defined description of the activity and its objectives, the nature of the interaction during the activity, consent (if relevant), release, confidentiality, compensation, data privacy, compliance, declaration of conflict of interest, and timelines.”³

The National Health Council has recently created a tool for use in the United States to estimate the Fair Market Value (FMV) for patients and patient advocates. I’m not sure if this tool has really caught on in the industry yet, but it might be helpful to review if you are asked to provide input to a pharmaceutical company or other industry members.

Remember, that as a person living with lung cancer, you have a lot of valuable information about your needs. Ask questions about how your participation in an activity such as a focus group or patient council is going to be used. Find out if the sponsors of an activity will share with you the end result of the project in which you are involved. Make it clear that we expect two-way communication as patients and patient advocates and this will encourage increased patient-centricity!

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.