The Power of the Patient Voice

More and more, we hear about the term “patient-centered care” and the role of the “patient voice” in healthcare. But what does it mean and what does it look like in action?

What Is “Patient-Centered Care”?

In patient-centered care, healthcare providers, pharmaceutical companies, research groups, and advocacy organizations partner with patients to understand their needs and find ways to give them the best care experiences, access to treatment options, and improved health outcomes. It involves informing and empowering patients at every step of their health journey to help them make decisions about their care that align with their priorities. In short, patient-centered care means listening to and valuing the patient’s voice in their own care.

Patient-centered care is not limited to the doctor–patient relationship. Hospitals, educational organizations, health-oriented nonprofits, pharmaceutical companies, and the research community partner with patients and rely on their experiences and feedback to be sure their programs and priorities are relevant to the communities they serve. 

Listening to the Patient Voice 

Patient-centered care can take many forms in an organization. At the Crohn’s & Colitis Foundation, IBD patients and caregivers assist in the development and review of new and existing educational resources.

They share their knowledge and experiences through focus groups and listening sessions and advise us on what is important to them and which IBD topics they’d like to learn more about.

Patients also serve as research reviewers to provide input on which grants can best address their unmet needs. They also participate on our workgroups to help us set research priorities and understand how research can improve their quality of life.

Through our Clinical Trials Ambassadors program, patients share their clinical trial experiences and raise awareness on the benefits of participating in a clinical trial. Their feedback also helps us develop educational materials about clinical trials.

The issues we advocate for on the state and federal level are informed by patient advocates. Their stories are a critical component of our advocacy campaigns. Legislators are more likely to act on an issue when they hear about it from a constituent. Step therapy legislation is one example of the Foundation’s successful efforts. 

An Example of the Patient Voice in Action

The Foundation partnered with the pharmaceutical company Sanofi to incorporate the patient’s voice into the drug development process. Insights provided by the Foundation’s Clinical Trials Ambassadors helped incorporate patients’ priorities into the development of two clinical trials for ulcerative colitis (UC).

Patients wanted medicines that are easier to take, leading the company to develop and test a new UC drug (in the RESOLUTE study) that can be taken orally. Patients were also looking for tailored treatments that take into account their own physiology. Based on this principle, Sanofi’s LIBERTY-UC SUCCEED study is testing a medication for people whose UC is caused by a certain set of proteins within the body. Patient feedback also resulted in improvements to measuring the severity of UC in both studies using new clinical outcomes measures that were based on symptoms patients defined as most burdensome. Feedback by the Foundation’s Clinical Trials Ambassadors also helped Sanofi expand access to clinical trials for underrepresented communities. 

Making Your Voice Heard

There are many opportunities to use your voice for the benefit or your own healthcare and the community at large. The Foundation has resources for communicating and partnering with your doctor to ensure that you are getting the care that is right for you. You can also drive our mission to find cures and improve the quality of life for people living with IBD through some of the roles mentioned here and more. Learn how you can be involved and have your voice heard.

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