| Literature DB >> 35906697 |
Sarah Davis1,2, Nancy Pandhi3,4,5, Barbara Warren5,6, Njeri Grevious5,7, Madison Crowder8, Haley Ingersoll5, Elizabeth Perry3,9, Andrew Sussman4, Rachel Grob10,5,9.
Abstract
BACKGROUND: Those whose lives are most directly impacted by health care-patients, caregivers, and frontline staff-are ideally situated to improve patient health care services and care quality. Despite a proliferation of literature on both Patient and Public Involvement (PPI) and clinical quality improvement (QI), concrete strategies regarding how to involve patients remain elusive. AIM: Research suggests catalyst films, comprised of rigorously-analyzed interview data from diverse patients about their experiences with health and health care ("catalyst films") are a promising way to bring actionable patient feedback to QI. To date, such films have been crafted primarily by researchers. This project aimed to inform the science of engagement through analyzing how deliberate PPI informed the process of creating catalyst films.Entities:
Keywords: Catalyst film; Co-design; DIPEx methodology; Film; Patient and public involvement; Quality improvement; Trigger film; Video; Visual participatory methods
Year: 2022 PMID: 35906697 PMCID: PMC9335457 DOI: 10.1186/s40900-022-00369-3
Source DB: PubMed Journal: Res Involv Engagem ISSN: 2056-7529
Stakeholder groups involved in the construction of the catalyst film
| Stakeholders | Definition | Role |
|---|---|---|
| Patient and Consumer Advisors | Advisors with previous participation in Health Experiences Research Network (HERN) activities who bring subject matter, lived, and/or process experience to a project | As research partners, apply experience and training to center patient and family experiences and help the team “walk the talk” of co-design |
| Patient Experience Ambassadors | Research participants trained to disseminate health experiences research pertinent to their own health condition. They combine their own personalized lived experiences with knowledge of experiences of others who participated in the HERN study | Contributing at the “engage” level of PPI, shared insights on ideal content for catalyst films, and how catalyst films should be used. Contributed interviews, of which excerpts were used in final films |
| Clinicians | Clinicians offering their professional lens on current transformation in health care services regarding mental health, and the realities and constraints facing quality improvement efforts | Represent clinicians’ priorities and concerns and help the project team seek input from other clinicians (via focus groups) to develop catalyst films that will meet the needs of practicing clinicians |
| Principal investigators (PIs) | Project leaders with expertise in patient experiences research, quality improvement research, Patient and Public Involvement, and primary and secondary use of HERN materials | Provide oversight, ensure regulatory compliance, develop research protocols and lead research activities, set timelines and agenda for team discussions, ensure completion of final products, and link back to HERN |
| Additional Researchers | Researchers with subject matter expertise and unique access to clinicians at partner university | Review literature, contribute to protocol and liaise to, and co-lead, two clinician focus groups in a different geographical location |
| Research staff | Staff with variable abilities and assignments to ensure smooth project management and execution | Interview Patient Experience Ambassadors; conduct literature review; cut film clips and assemble drafts for project team review; manage project logistics, budget, and Institutional Review Board (IRB) process |
Fig. 1Timeline and research team activities, including patient and public involvement
Stakeholder influence on catalyst film construction
| Project team questions | Stakeholder contributions | Decisions |
|---|---|---|
| Are there lessons from other teams creating catalyst films, or using EBCD, that can inform our own team process? | All project team members were invited to identify key informants to fully inform our process | Key informant input influenced our team to: |
| Three informant groups were identified; one by a consumer advisor and two by the PIs | Prioritize emotional salience over strictly adhering to representation in order to maximize the ability to act on the information shared | |
| All team members were invited to attend key informant interviews; PIs, research staff and consumer advisors were represented at every meeting | Highlight positive as well as negative experiences | |
| Include footage discussing experiences with depression in general, not just with health care | ||
| How do we envision these films will be used in the United States? | All team members were invited to share insights and those with extensive experience in quality improvement (QI) in the United States shared observed barriers to patient participant involvement (PPI) generally | Clinician and PI experience drove the decision to “market” films for use broadly in QI and education in the US through description in a generalized guidebook, with a goal of maximizing uptake and spread |
| Clinicians (in focus groups) and patient experience ambassadors (in interviews) were asked about their expectations for film usage | One consumer advisor was strongly opposed to this decision to not describe films as solely a product for Accelerated Experience Based Co-Design (AEBCD) | |
| Entire project team agreed with key informants who stressed that balance is important: “films can be most effective if they focus not just on experiences with services, but on what it is like to live with the particular illness or condition focused on in the project” | ||
| How should film design differ from UK films? | Team members, clinician focus groups and patient experience ambassadors viewed excerpts of a UK catalyst film and were asked about content and length for use in QI in the United States | Stakeholders agreed to two adaptations” |
| US context requires shorter films | ||
| Actors should not be used in films | ||
| Do we have sufficient actionable clips in existing and newly obtained footage? | PI/clinician and clinician re-coded transcripts for actionable material and then shared results with the whole team | Team included segments from re-coded original transcripts after extensive and iterative deliberation. We also noted specific limitations in existing footage, and made collective decision to include actionable footage from new interviews with patient experience ambassadors |
| In a parallel process, research staff was re-interviewing patient experience ambassadors to inform use of film, and identified that interviews included additional actionable insights | ||
| Which clips should make the final cut, and in what order should they be presented? | Multiple rounds of individual team member review and group discussions | Key informants stressed that it is critical that content balance positive and negative, leading with the former if possible so that the film is “modeling good care, so those watching will know if they are not living up to that example” |
| Input from key informants about balancing emotional range of content | Patient experience ambassadors’ stressed that films should contain a message of “hope and change” to convey that young adults have expectations from their care teams and desire engagement | |
| Input from patient experience ambassadors about emphasizing “hope and change” in the films | ||
| What should these films be called? | Identified that name “trigger film” used in the UK would not be appropriate for the US context, brainstormed other possible names, brought question to key informants | Decided on “catalyst film,” as these films are designed to rally viewers to action for improvement |
| How do we ensure ample representation while prioritizing the ability to act on the information shared? | Team reviewed multiple drafts of the film and identified missing experiences (e.g. LGBTQI and BIPOC representation) | Team agreed to review additional transcripts and clips to ensure representation without sacrificing the ability to act on the information shared |
| PIs asked advisor/ambassador if she would consider being re-interviewed for additional on-camera BIPOC representation | ||
| Advisor/ambassador agreed to be re-interviewed | ||
| How do we respond to the reality that many BIPOC participants elect to remain anonymous? | Team discussed options to expand non-anonymous clips and how to message about use of silhouettes | Advisor/ambassador agreed to have new footage used |
| PI asked advisor/ambassador if they would be willing to be re-interviewed on camera | PIs agreed to find additional actionable clips of BIPOC participants | |
| Team discussed how best to visually represent participants who wished to remain anonymous | Team determined they did not want to use actors and discussed other options including mirroring choices made by participants on the HealthexperiencesUSA website (e.g. flowers, silhouettes) and agreed on the use of distinct and humanized silhouettes | |
| Team ultimately decided that statement about use of silhouettes would not elaborate on identity or reasons for decision to remain anonymous |