ABSTRACT
INTRODUCTION: Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners' perspective. METHODS: Qualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute. RESULTS: This paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs' lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other. CONCLUSION: The partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.
Patients and caregivers who have lived with a condition have an important and unique perspective researchers should consider. To this end, patients and caregivers have expanded their involvement in the design and conduct of clinical research, joining research teams and being engaged in the research process from start to finish. Researchers have reported on the positive impact that these "patient partners" or "patient advisors" have on research. But few papers report on the impact on the patient partners/advisors from being on a research team.Here we report the lived experiences of the 16 Patient Partners who served on the research team for a large study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. These Patient Partners offered their input over 7 years, spanning from study design, study conduct, understanding results, to sharing results.To understand the Patient Partners' experiences, we conducted interviews asking about their journey on the research team. Motivations and reasons they became Patient Partners Initial experiences with the research team If and how over time, they became comfortable and developed confidence If and how the research team made them feel valued and respected The personal and professional impact of being a Patient Partner Their advice to researchers and fellow patients considering including or joining as Patient Partners or advisors By reporting the perspectives of these 16 Patient Partners, we hope to support continued movement toward broader and better inclusion of patients and caregivers on research teams.
ABSTRACT
BACKGROUND: The Community Asthma Initiative (CAI) was included in the New England Asthma Innovations Collaborative, which received a Centers for Medicare and Medicaid Services (CMS) Innovation grant. Under this grant, CAI transitioned from a mixed community health worker and nurse model to a nurse-supervised community health worker model. CMS limited enrollment to patients with Medicaid and encouraged 3 home visits per family. METHODS: A total of 389 patients enrolled under the CMS grant at Boston Children's Hospital from 2013 to 2015 (CMS group) were compared with 733 CAI patients with Medicaid enrolled from 2005 to 2012 (comparison group). Changes in 5 asthma-related measures (emergency department visits, hospitalizations, physical activity limitations, missed school days, and parent and/or guardian missed workdays) were compared between baseline and 6 and 12 months postenrollment. Measures were analyzed as dichotomous variables using logistic regression. Numbers of occurrences were analyzed as continuous variables. Changes in quality of life (QoL) among the CMS group were examined through a 13-question survey with activity and emotional health subscales. RESULTS: Although patients in both groups exhibited improvement in all measures, the CMS group had greater odds of decreased hospitalizations (odds ratio 3.13 [95% confidence interval 1.49-6.59]), missed school days (1.91 [1.09-3.36]), and parent and/or guardian missed workdays (2.72 [1.15-6.41]) compared to the comparison group. Twelve months postenrollment, the CMS group experienced improvement in all QoL questions and subscales (all P values <.01). CONCLUSIONS: The CMS group showed improved outcomes for hospitalizations and missed school and workdays compared to the comparison group. The CMS group also exhibited significant improvement in QoL.
