PERC Grant Awards
Project Title: Using Body Mapping to Develop a Patient Centered Research Agenda About Long COVID-19
Project Status: Ended
Funding Source: Patient Centered Outcomes Research Institute
Project Number: EASC-COVID-00231
Link to PCORI webpage
Principle Investigator (PI): Dr. Sara Santarossa
Background: Post-acute sequala of COVID-19 (PASC) or “long COVID-19” is a crippling aftermath of the pandemic wherein 10-30 percent of patients diagnosed with COVID-19 continue to experience symptoms after their infection period is over. To date, there is no formal definition/consensus on terminology for PASC; risk factors for who will experience PASC are still emerging; and there is uncertainty regarding how to alleviate the symptoms of PASC.
Proposed Solution to the Problem: The proposed solution is to convene a group of stakeholders including patients, caregivers, researchers, and healthcare providers to come to an understanding of the unique needs of COVID-19 long haulers when engaging in care and use that knowledge to collaboratively determine a future PCOR/CER research agenda.
Objectives: The work will begin at Henry Ford Health System (HFHS) in Detroit, Michigan with a mid-term goal to create the sustained engagement of patients with PASC and HFHS’s COVID Recovery Care Service, clinical staff, and researchers in the design, implementation, and dissemination of PCOR/CER research in PASC. The long-term objective is to develop a national knowledge base to encourage PCOR/CER research in PASC. The team’s mid- and long-term goals will be pursued after the period of the proposed project and thus, to accomplish these goals, the team will focus on the following short-term objectives:
- Establish a collaborative comprising COVID-19 long haulers and caregivers, HFHS’s COVID Recovery Care Service, clinical staff, and researchers focused on the unique needs of this PASC population
- Train all stakeholders to facilitate a shared understanding of patient-centeredness
- Through visual storytelling and a body mapping process as well as nominal group processes, identify issues that matter to these stakeholders
- Use the results of this process to collaboratively generate and prioritize a PCOR/CER research agenda
- Determine tailored dissemination strategies for the PCOR/CER research agenda for each stakeholder group
- Investigate and report on funding opportunities to pursue specific items from the PCOR/CER research agenda
Projected Outcomes and Outputs: The project team seeks to leverage the voices and lived experiences of those suffering from PASC to co-design a virtual knowledge exchange opportunity and, ultimately, with the aid of PASC caregivers and other stakeholders, develop a high-quality, patient-centered, PASC-focused research agenda for dissemination. Body mapping will be utilized as an innovative approach to capture the patient’s journey with long COVID-19. Body maps will be put on display for the broader community in a virtual body mapping gallery and further insights around PASC experiences and elicited emotions, narratives, and discourse will be gathered through a storytelling survey. Finally, using the gathered information, the stakeholder team will, using a phased approach, construct a fully formed PCOR/CER research agenda.
Patient and Stakeholder Engagement Plan/Project Collaborators: The team plans to recruit stakeholders that represent a variety of experiences with PASC to bring multiple viewpoints. Patients and stakeholders will be engaged from the onset of the award in several capacities. During body mapping, the team will engage 20 patients with long COVID-19 in three bi-weekly sessions. The virtual body mapping gallery, co-designed by the stakeholder team, will be a public event. The target recruitment for the stakeholder team, to create diverse representation, is 14 members: five patients (COVID-19 long haulers), five caregivers, two scientist partners, one clinical partner, and one PCOR expert. The stakeholder team will be expected to attend seven interactive/collaborative meetings wherein tangible deliverables will be co-designed.
The body map artwork was displayed in-person at the Henry Ford Cancer Institute during the month of September (2022). A Gallery Reception Event was held to promote and showcase this artwork and the participants. Please click here to view the video from this event.
Photos from Event: https://www.henryfordgalleries.com/Events/Community-Employees/Covid-Body-Mapping-Gallery/
Click Link to Virtual Gallery: Welcome | Covid Body Mapping V (dmurphy77.wixsite.com)
- Long COVID patients using art to show struggle with lingering symptoms (wxyz.com)
- Long COVID patients, dismissed by doctors, turn to art to show their pain | Bridge Michigan
Project Title: Body Mapping COVID-19: Crisis Management in Frontline Healthcare Providers
Project Status: Active
Funding Source: Blue Cross Blue Shield of Michigan Foundation
Principle Investigator (PI): Sara Santarossa, PhD
The project seeks to leverage the lived experiences of resident-physicians (physician learners) who care for COVID-19 patients using an innovative Body Mapping approach. Body maps are life-size human body images created through art-based techniques to visually represent aspects of people’s lives and the world they live in. Body mapping will allow physicians to describe their journey with caring for COVID-19; connecting in their narratives and supporting their visualization of problems faced and sources of strengths. Body maps will be used in a virtual knowledge exchange opportunity for the broader community and to draw comparisons from COVID-19 patient perspectives. Bringing together stories from physician learners and patients will create an opportunity to improve patient-centered healthcare practices and may reduce burnout in frontline workers. Physician burnout affects the entire has been associated with higher self-reported errors, projects that can reduce physician burnout are important undertakings to improve the healthcare system.
Project Title: Using storytelling to build capacity for PCOR/CER in MAternal MentAl health (MAMA)
Project Status: Active
Funding Source: Patient Centered Outcomes Research Institute (PCORI)
Principle Investigators (PI): Sara Santarossa, PhD, Amy Loree, PhD
Background: Mental health conditions are a top medical complication of pregnancy and childbirth and are associated with a range of adverse maternal and child outcomes. Approximately one in seven to one in four birthing people experience symptoms of a mental health condition during pregnancy or postpartum, yet few are diagnosed or treated. There remain critical knowledge gaps and significant challenges to adequately addressing maternal mental health. Improving capacity to address maternal mental health through evidence-based prevention and intervention efforts designed, implemented and evaluated with patient engagement and involvement can reduce maternal morbidity/mortality and improve child outcomes.
Proposed Solution to the Problem: The project team’s solution is to convene a stakeholder group of patients, caregivers, providers, community members and researchers to understand the needs of birthing people; specifically, improving the capacity to address maternal mental health and using that knowledge to collaboratively determine a future patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) agenda. Incorporating the voices of all stakeholders will increase patient-centeredness in future maternal mental health research. In a phased approach, a fully formed PCOR/CER research agenda can be disseminated efficiently and effectively to target audiences and decision makers, leading to better research project receptivity and implementation of future PCOR/CER evidence-based findings in maternal mental health research.
Objectives: The project team’s work will begin at Henry Ford Health (HFH) in Detroit, Michigan with mid- and long-term goals that entail creating sustained engagement of perinatal patients, providers and researchers in the design, implementation and dissemination of PCOR/CER on maternal mental health. To accomplish these goals, the project team will focus on these short-term objectives:
- Gather patients, researchers, providers and community to understand patient needs and inform development of PCOR/CER questions.
- Convene a stakeholder team of 22 patients, caregivers, researchers, providers and community members.
- Train all stakeholders to facilitate a shared understanding of patient-centeredness.
- Through storytelling as well as nominal group processes, identify issues that matter to stakeholders.
- Use results from this process to collaboratively generate and prioritize a PCOR/CER agenda.
- Determine tailored dissemination strategies for the PCOR/CER agenda for each stakeholder group.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include: 1) hold a storytelling symposium to share perspectives, build relationships and invite community input on improving maternal mental health; 2) establish a sustainable, collaborative stakeholder team of researchers, providers, patients, family and community members focused on addressing maternal mental health; and 3) develop PCOR/CER agenda and dissemination and implementation plan to further patient-engaged maternal mental health research.
Medium-term outcomes (0-2 years post-project period) include: 1) develop and submit PCOR/CER grant applications based on the co-created research agenda; 2) continue regular stakeholder team meetings in order to continuously evaluate changing needs of the population; 3) publish and present findings from the proposed project.
Long-term outcomes (3+ years post-project period) include: 1) sustained engagement of perinatal patients, their families, associated community partners (e.g., doulas, community health workers, non-HFH patients, organizations serving pregnant and parenting women and their families), providers, and researchers in the design, implementation and dissemination of PCOR/CER in maternal mental health.
Project Title: Patient-Engaged Validation of the PEIR Survey Enhanced by Inclusion, Diversity, Equity, Acceptance and Safety (PEIR-IDEAS)Project Status: Active
Funding Source: Patient Centered Outcomes Research Institute (PCORI)
Principle Investigators (PI): Sara Santarossa, PhD
**This is the first ever research project for HFH to be awarded by the Patient-Centered Outcomes Research Institute (PCORI)
Background: Meaningfully collaborating with patients in the research process can improve the quality and relevance of a research study. Patients bring diverse and thoughtful perspectives to research teams and ensuring that they are engaged is a measure of success. Unfortunately, few surveys for measuring patient engagement in research exist, and existing surveys have not been tested in diverse populations. In PEIR IDEAS - Patient Engaged Validation of the Patient Engagement In Research (PEIR) Survey Enhanced by Inclusion, Diversity, Equity, Acceptance, and Safety (IDEAS), a diverse pool of patients from the Henry Ford Health’s (HFH) Patient Engaged Research Center (PERC), an established group of 465 Patient Advisors (PAs), will not only test the survey, but will also play an integral role in conducting the research that improves the survey.
Proposed Solution of the Problem: The purpose of PEIR IDEAS is to convene a team of researchers, patients and community partners that will conduct research side-by-side in order to refine a survey which quantifies meaningful patient engagement in research.
Objectives: The team will be created at HFH in Detroit, Michigan with a mid-term goal of creating the sustained engagement of a diverse group of stakeholders in the design, implementation, evaluation and dissemination of science of engagement research. The long-term objective is to produce a model for measuring meaningful patient engagement in research that is adaptable for various settings and catchment areas, understanding how engagement in research improves the aims, design and impact of research findings, which may in turn improve patient care and satisfaction. To accomplish these mid- and long-term goals, the proposed project will complete the following short-term objectives:
Aim 1. Establish a consultative stakeholder team (i.e., Science of EngAgement Team–SEAT) comprised of patients, researchers who work with patients, community members and the existing PERC team.
- Advertise the opportunity to join SEAT to the entire PA Program with the goal of recruiting an additional four SEAT members.
- Train SEAT team on all aspects of questionnaire validation, including how to moderate focus groups and analyze qualitative and quantitative data.
Aim 2. Evaluate the Patient Engagement In Research Scale (PEIRS) in a new population of respondents (i.e., diverse PAs) with PAs meaningfully engaged as researcher partners.
- Use focus groups, co-moderated by a researcher and a trained patient, to gather expert opinions from patients and researchers alike to gain insight into their overall assessment of the survey.
- Test the survey in a representative sample of patients.
- Using the results of the focus groups and the survey trial, make statistically informed decisions on the particular survey items that belong/do not belong in the final version.
Projected Outcomes and Outputs: By the end of the proposed project, all involved patients will have received comprehensive training on how to assess a survey. The final survey, informed by the end-to-end research, will be disseminated to all project participants, shared on PERC’s website and shared with PCORI as an Engagement Resource. Additionally, ideas for further dissemination will be generated at SEAT meetings with patient input.