The use of participatory action research to design a patient-centered community health worker care transitions intervention

Background: Policymakers, patients and clinicians are increasingly eager to foster patient involvement in health care innovation. Our objective was to use participatory action research with high-risk hospitalized patients to design a post-hospital transition intervention.

Methods: We conducted qualitative interviews with sixty-five low-income, recently hospitalized patients exploring their perceptions of barriers to post-hospital recovery and ideas for improvement. We then used a modified grounded theory approach to design an intervention that would address each barrier using patients׳ suggestions.

Results: Five key themes were translated into design elements. First, patients wished to establish a relationship with healthcare personnel to whom they could relate. The intervention was provided by an empathic community health worker (CHW) who established rapport during hospitalization. Second, patients suggested tailoring support to their needs and goals. CHWs and patients designed individualized action plans for achieving their goals for recovery. Third, patient goals were misaligned with those of the inpatient team. CHW facilitated patient-provider discharge communication to align goals. Fourth, patients lacked post-discharge support for predominantly psychosocial or financial issues that undermined recovery. CHWs provided support tailored to patient needs. Finally, patients faced numerous barriers in obtaining post-hospital primary care. CHWs helped patients to obtain timely care with a suitable provider.

Conclusions: Low-income hospitalized patients voiced needs and suggestions that were directly translated into the design of a scalable patient-centered CHW intervention.

Implications: The approach of using participatory action research to tightly mapping patient input into intervention design is rapid and systematic strategy for operationalizing patient involvement in innovation.