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Making Good Healthcare Decisions Requires a Patient-Centered Approach to Health Research

Biomedical research may not be something you’ve thought much about, but people just like you right here in New Orleans and throughout Louisiana are partnering with researchers and actively shaping how research is being done. This work is happening via a collaborative research network called REACHnet, which has brought together the patient community, clinicians and local researchers to advance patient-centered research in the state.

Involving patients and communities as partners in the research process is a new approach, but it ensures that researchers address the issues and outcomes that matter most to the people living with health conditions. REACHnet is committed to incorporating the patient voice into local research projects.

Why this new approach? For all of its advances, traditional health research often hasn’t answered questions or focused on outcomes that matter most to patients and those who care for them.

For example, traditional research has shown that certain medications can lower blood pressure, control diabetes, or ease depression. But researchers often don’t explore whether these treatments affect some people differently or how they might impact outcomes such as mood, energy levels, or other quality-of-life issues.

That’s a problem because no two patients are alike and treatments’ effectiveness can vary based on many factors. Personal preferences also play a role. One person might prefer a treatment that’s slightly less effective, but has fewer side effects, while another wants the most effective option. Without science-based information that enables you to weigh the benefits and trade-offs of each care option, you risk wasting time and money on ineffective treatments.

The Patient-Centered Outcomes Research Institute (PCORI) is a nonprofit committed to advancing patient-centered science and supporting research committed to finding answers to these challenges. To date, PCORI has invested more than $1.6 billion in patient-centered studies and related projects nationwide, including supporting REACHnet, two large trials based in Louisiana institutions, and many other projects involving Louisiana citizens.

Conducting patient-centered research requires researchers like myself to bring patients, caregivers, clinicians, and other healthcare decision makers into the study process. This means people who are actually going to use the results help determine what questions are investigated, which health outcomes are most important, and how the study is conducted. For example, a Tulane researcher recently partnered with REACHnet to examine care coordination among Diabetes patients. Three local patients with Diabetes are serving as patient partners, part of the research team and steering committee, to provide a real life patient perspective to researchers. In addition to the patient partners, this project is using local patient advisory groups from Ochsner and REACHnet to further inform elements of the project and ensure patient-centeredness throughout the project.

Through my involvement in several PCORI-funded projects, I’ve seen that the Louisiana community is ready to be partners in research–and their input makes the research better. Members of the patient community that want to get involved can go to www.REACHnet.org  (patient community page) and sign-up to receive the “Health in Our Hands” patient newsletter. This newsletter provides information about current projects and upcoming opportunities for participation.

 I’m confident that this patient-centered approach to research will continue to gain momentum as these studies yield more useful results that the healthcare community can quickly incorporate into practice and use to guide patient and provider decision making.

And that’s important, because as our healthcare system evolves, patients are required to be more active and informed consumers. They are taking on greater responsibility for choosing among the many options available and how to spend their healthcare dollars. This new approach is essential to empowering patients as healthcare consumers—and to building the patient-centered and evidence-based healthcare system we all want.

Rebekah Angove, PhD, is Associate Director of Health Services Research at the Louisiana Public Health Institute (LPHI) and an adjunct Assistant Professor at Tulane University. Dr. Angove serves as the Director of Stakeholder Engagement for REACHnet, a PCORI-funded partnership between LPHI and five partner organizations. She is also the Project Lead on a PCORI-funded project that is designing training programs to increase skills and build capacity of medical students to engage with patients during their future careers as physicians and clinician researchers.