Engaging Patients and Communities in HEAL Research - NIH HEAL Initiative Webinar

More Than a Committee, It’s a Community: Empowering Patient Partners

The presentations in this webinar explored how two HEAL-funded studies incorporated and benefitted from patient and other stakeholder engagement. Dawn Edwards, a person living with chronic kidney disease and a member of the HEAL Community Partner Committee, began by describing her experience with the Hemodialysis Pain Reduction Effort (HOPE) study. HOPE aims to reduce how pain interferes with the lives of people who receive dialysis treatment. 

Having worked as a patient advocate for over 25 years, Edwards was eager to help when HOPE researchers asked if she was interested in becoming a patient advisor. She describes feeling valued and empowered to share her experiences. “We were invited to sit, not in the back like patients usually do when they’re involved in things, but in the front,” said Edwards. “The investigators spoke to us, asked about our experiences, and invited us to share. That made the patients feel welcome.” 

Dr. Kirsten Johansen, Director of Nephrology at Hennepin Healthcare in Minneapolis, worked alongside Edwards on the recruitment committee of the HOPE study. Johansen is committed to patient-centered care and aims to develop a partnership with patients based on shared decision-making. “Patients bring their perspective as experts from their own experience and knowledge gained,” said Johansen. “They know what it's like and we really don't.” 

Johansen described how she and other researchers incorporated patient engagement into the HOPE study. Patients were involved in the design of the HOPE study from the outset, even before each site submitted their initial protocols. Their input shifted the focus of HOPE away from opioids and toward the goals of helping people and reducing pain. Patients were actively involved in designing the study logo and tagline, the informed consent form, and other recruitment and educational materials. During the study, patients participated in steering committee meetings, recruitment and retention committees, the patient advisory board, and more collaborative groups. 

Developing a study that ensures equitable power between researchers and a diverse cohort of patient advisors can be a challenge. Johansen recommends that researchers work toward this goal by thoroughly training and educating patients on the research methods, compensating patient partners for their time and efforts, and establishing regular dialogue between patients and researchers. 

Improving Treatment Access in the Criminal Legal System

In the second presentation, Dr. Rosemarie Martin and Linda Hurley discussed their efforts to increase access to medications for opioid use disorder (MOUD) among people involved in the criminal legal system. 

The natural progression of addiction leads to increased drug use despite adverse consequences, which often include involvement in the criminal legal system. One in five incarcerated individuals has an opioid use disorder (OUD) and individuals with more severe OUD are more likely to become incarcerated. “This may begin a cycle that embeds someone further and further into the criminal legal system,” says Martin. 

Following release from incarceration, people with OUD are at a significantly high risk of dying from an overdose. In fact, 60 to 80% of people in community supervision programs, such as probation and parole, have substance use disorder. According to Martin, people with OUD are up to 129 times more likely to die in the two weeks following community re-entry. Research has demonstrated that medications for opioid use disorder save lives, but stakeholder biases, lack of resources, and other barriers limit access to these treatments. 

Martin and Hurley lead a part of the HEAL Justice Community Opioid Innovation Network (JCOIN), which tests approaches to increase access to quality care for people with opioid use disorders in correctional settings and community supervision programs. JCOIN focuses on engaging two main stakeholders in the larger opioid use ecosystem: criminal legal system workers and community treatment providers. 

These stakeholders were involved in JCOIN from its conception because the funding mechanism for JCOIN stipulated that each research hub include at least one criminal legal system member and one community-based service provider as a part of the investigative team. Martin and Hurley lead a JCOIN study titled Providing Interventions for Enhancing Recovery in Community Supervision (PIERS) study. Throughout the study, PIERS researchers held listening sessions with community supervision leadership and opioid treatment providers from Rhode Island, Pennsylvania, and North Carolina. The investigators learned about the key goals and challenges faced by each of these stakeholder groups. 

After these discussions, PIERS researchers engaged local change teams composed of probation officers, treatment providers, and patients at the local level. These teams identified goals, developed an action plan, and are already taking steps toward achieving their goals. They developed SUDSI, a substance use disorder implementation protocol, which is going to be used with all intakes into community supervision programs. PIERS also developed a multi-component, evidence-based toolkit with training and educational materials for community service providers. 

None of these achievements would have been possible without community engagement. “People need to feel heard,” said Hurley. “We need to create systems in which stakeholders feel that their perspectives are respected and valued.” When faced with what can seem like overwhelming implementation barriers, investigators can use connection and collaboration to significantly improve the impact of their research.