An independent forum for patient and caregiver partners can create a new level of engagement and contribution. “It can become a venue for the group to take charge of recommendations in an entirely different way than if you have few patients or family members working directly with a large team of researchers,” says Hanan Aboumatar, MD, MPH.
In addition to having a patient and family partners group, Aboumatar’s team conducted interviews with a wide range of stakeholders. “We began by thinking about who knows about patients’ needs, and we sought them out,” Aboumatar says. Her team collected input from hospitalized patients and their caregivers, home healthcare nurses, community psychiatric workers, and technicians who teach patients to use oxygen at home.
Developing the study was more time-consuming and complex than the team members initially anticipated. But they found it was well worth the effort to produce a meaningful, patient-centered intervention that addresses the needs of a broad range of chronic obstructive pulmonary disease (COPD) patients.
- Plan to engage a broad and heterogeneous group of patients, caregivers, and stakeholders, and consider including representatives of the group as co-investigators.
- In addition to working with patients, seek input from others who work with hard-to-reach patients and have insight into their needs.
- Build in the necessary time and resources to get adequate feedback and refine your planned intervention with a diverse set of patients and stakeholders.