Development of Video Animations to Encourage Patient-Driven Deprescribing: A Team Alice Study

Abstract

Objective:

Patient-driven deprescribing initiatives aim to increase patient knowledge and strengthen self-advocacy skills. This article describes the development of three animated videos designed to educate older adults about unsafe prescribing and medication harms, based on the actionable lessons from the death, by polypharmacy, of an older adult in our community.

Methods:

Using a community based participatory research approach (CBPR), members of three senior centers (n=53) and the Deprescribing Partnership of Western New York (n=30) were recruited and participated in two rounds of focus groups to guide the video development.

Results:

Stakeholder input led to changes in content, wording, and visual presentation. The final versions of the videos emphasize the following messages (1) “New medications and what you should know about the risks”, (2) “What you should do when a doctor tells you never to take a certain medication”, (3) “What you should know about medications when you are in the hospital.”

Conclusion:

The study highlights the successful process of using CBPR to develop a series of videos designed to provide information on the risks of polypharmacy, and empower older adults to advocate for themselves.

Practice Implications:

Animated educational videos are a novel strategy to address medication harm in older adults. This research is a critical first step to increasing patient-led discussions that reduce the incidence of medication harm and inappropriate medication use among older adults. ​

1. Introduction

Older patients are at risk to experience harm caused by inappropriate medications and polypharmacy [1, 2]. Recent literature identifies various classifications of potentially inappropriate medications (PIMs) that increase the risk of adverse drug reactions (ADRs), hospitalization, and mortality for older patients[3–9]. In general, these are medications where the risk of taking them outweighs potential benefits[10]. Despite the increased risk, PIMs continue to be prescribed at very high rates, due in part to a lack of prescriber knowledge of PIM evidence, lack of interoperable health information exchange, and a fragmented health system for older patients [2, 11–14]. Over the last decade, the prevalence of polypharmacy has nearly doubled, placing large numbers of older adults at risk for harm[2, 14].

Reducing the number of harmful medications prescribed to older patients, through deprescribing, can improve medication outcomes [15–18]. Current deprescribing strategies include clinical tools, prescriber training, deployment of pharmacists in the clinical setting, and the use of quality measures to reduce PIMs and/or polypharmacy [19–22]. These strategies are provider-driven, focusing on supporting the prescriber and clinical team, and have had limited success [10, 23]. Despite the willingness of providers [24] previous studies report barriers to implementation, including multiple prescribers, [25] physician time, and patient reluctance [15, 26].

Given the variable success of provider-driven deprescribing efforts, and a continued high prevalence of polypharmacy, it is clear that additional approaches are needed. Patient-driven deprescribing is an emerging approach that involves strategies to increase patient knowledge and strengthen their skills to drive the process [27, 28]. It requires patients and/or caregivers to identify opportunities for deprescribing and initiate the conversation with prescribers. Some work has been done in this area. For example, direct-to-consumer education and informational leaflets were effective at improving shared decision-making and safely reducing medications [28, 29]. A mobile app has shown preliminary success in prompting patients to talk with their physician about risks of anticholinergic drugs [30]. One ongoing study is examining a clinic-based intervention using a brochure to activate cognitively impaired patients and their family members around deprescribing combined with a multi-component intervention with primary care clinicians, in a pragmatic, cluster-randomized design at Kaiser Permanente Colorado [31]. Overall, there has been limited research in patient-driven deprescribing.

In other contexts, video-based health education has shown to be an effective method for changing health behaviors [32, 33]. Animations are commonly used because they can communicate complex messages and overcome literacy barriers, as well as being relatively inexpensive and easy to create [34–36]. To our knowledge, video animations targeting patient-driven deprescribing among older adults do not exist in the literature.

1.1. Study Aims

In this paper, we describe the development of three animated videos designed to educate older adults and their caregivers about unsafe prescribing and medication harms, and to empower them to initiate deprescribing conversations with their healthcare providers. These videos aim to provide a novel patient-driven deprescribing approach to complement traditional efforts of providers and health systems. Using Community Based Participatory Research (CBPR) principles, we developed video animations in close consultation with older adults and other key stakeholders. Building on recent CBPR literature, a secondary aim was to evaluate the CBPR process in the development of educational videos on deprescribing.

This project is part of a broader response by Team Alice, a multi-stakeholder group focused on deprescribing. Team Alice is inspired by the true story of Alice Brennan, who passed away in 2010 as a result of preventable medication harm and system failure [37]. Team Alice consists of an academic research group at the State University of New York at Buffalo, and two stakeholder groups, namely the Deprescribing Partnership and Elder Voices. The Deprescribing Partnership (DeRx Partnership), represents health providers and systems and the newly founded Elder Voices (EV), represents patients and caregivers. The mission of Team Alice is to combat PIMs and polypharmacy by initiating strategies to deprescribe unsafe medication, reduce harm, and foster successful aging.

2. Methods

2.1. Study Design

Over an eleven-month period, we developed three animated videos to educate older patients and caregivers about the importance of medication safety and self-advocacy based on lessons from the experience of Alice Brennan. We selected a narrative intervention approach to develop the videos because stories have shown success in conveying health information that is accessible and resonates with the target audience [38, 39]. Further, narrative intervention seeks to determine how stories are understood[38], and as such, our research was designed through a constructivist lens where knowledge and meaning are co-constructed with stakeholders [40, 41]

The overall process was guided by CBPR principles, whereby research is conducted in partnership with community members with the intent to educate and empower them to implement change [42]. CBPR is particularly suited for translational research addressing health disparities[43] and can be effective in engaging older adults in research [44]. The premise of CBPR is that active and genuine engagement increases the likelihood of acceptance and enhances the value to participants [45]. CBPR frameworks are seen on a continuum[43, 46] and because the video themes were predetermined based on Alice’s story, our model would be defined as medium involvement [47].

Our CBPR approach focused on older patients and their caregivers, starting with Alice’s family and engaging extensively with EV. In addition, to ensure the healthcare provider perspective was incorporated, we engaged the DeRx Partnership. Specifically, we wanted to ensure that patient advocacy about deprescribing would be well received by providers. Our CBPR process is detailed below and involved: (i) recruitment of stakeholder groups (ii) development of videos with stakeholder input (iii) evaluation of the Elder Voices CBPR process. This study was approved by the University at Buffalo Institutional Review Board.

2.2. (i) Recruitment of stakeholder groups

Elder Voices was in a nascent form when the project began. Our goal was to accelerate its growth not only to serve this project but to develop a group that could actively partner on multiple future health research projects. This aligns with recent calls to focus on creating sustainable research groups of older adults as opposed to one-time projects [48]. We incorporated best practices for conducting research with older adults including, building on existing partnerships, having an engaged champion, starting with a specific project, recruiting older adults with other older adults, practicing openness and flexibility, soliciting organizational commitment, facilitating meetings with community stakeholders, establishing trust and open communication, and using multi-modal forms of communication [49–52]. We also consulted with the Patient Voices Network (PVN), a local patient stakeholder group, regarding strategies to effectively engage older adults in research [53].

Based on the above, we chose to expand Elder Voices by engaging older adults at senior centers through purposive sampling. We worked with Erie County Senior Services and the county Area Agency on Aging, to identify potential senior centers with a history of championing new projects. The intent was to recruit centers that had at least one group of older adults already meeting on a regular basis. Leveraging existing contacts within the research team, we approached two centers with active Aging Mastery Programs [54]. The research team was conscious of racial, geographic and economic diversity, so an additional urban center was approached, the serves a predominately African American, low income population. The center had an active fitness program that met regularly. All centers that were approached agreed to participate in an informational session. The centers were located in Western New York and represented urban and rural regions in Niagara and Erie Counties.

Each center facilitated an introductory meeting where Alice’s daughter [MBT] shared Alice’s story. A research team member explained the video project and informed stakeholders that the videos would be used for future research and to raise awareness on deprescribing. The original video concepts were presented at the meeting and attendees expressed interest in the topic and offered numerous examples of their own experiences. We provided handouts about Elder Voices and had a sign-up sheet for attendees who expressed interest in the video project. Based on initial feedback, we adapted our approach to emphasize stakeholder discussion, incorporate lay language with familiar examples to introduce key terms, and provide information in multiple ways (e.g., visual and audio formats). Inclusion criteria for participation were: age 60 or above; English language speaking; community-dwelling; and able to consent to participate.

The DeRx Partnership was approached to provide health system and provider’s perspectives. The DeRx Partnership is a multidisciplinary group that includes: physicians, pharmacists, physician assistants, nurse practitioners, health plan representatives, senior service organizations, and patient advocates with relevant expertise and interest in the topic. The DeRx Partnership role in the video development was to review original themes and script content and guide early stages of the video development process.

2.3. (ii) Development of the Animations

The videos are based on the experience of Alice Brennan, a vibrant 88-year-old active member of the community who died after being prescribed an anticholinergic muscle relaxant that led to multiple complications, and death. Despite being told to never take it she was prescribed this medication at the hospital without her knowledge. To understand the lessons of Alice’s experience, we asked her daughter [MBT] and son-in-law [JST], who both were closely involved in her care, “What do you wish you and/or Alice would have known that could have saved her life?” The family identified three themes they felt could make the most difference for other patients and families, namely: (1) “New medications and what you should know about the risks”; (2) “What you should do when a doctor tells you never to take a certain medication” (the term “Never Meds” was coined by the family to convey this scenario); and (3) “What you should know about medications when you are in the hospital.”

We used an iterative process, illustrated in the Figure below, to progressively develop these themes into three separate animated videos. Our process was modeled after previous research documenting animation development about living kidney donation [55]. Alice’s story was supplemented with a review of current published literature about medication safety and existing patient safety resources for older adults. At each stage of revision, the research team summarized input and feedback from focus groups and the family made final editing decisions.

Figure:

Steps 1 through 5 of video development.

2.3.1. Step 1 Draft Scripts

Alice’s family [MBT and JST] drafted the initial scripts based on the three themes identified in Alice’s story. They chose to use Alice’s voice in the first person. Each script introduced Alice as an older adult living independently, described an aspect of Alice’s care, and ended with advice from Alice to older adults on how to protect themselves from the harm that she experienced.

2.3.2. Step 2 Revised Scripts

The draft video scripts were reviewed by 30 members of the DeRx Partnership at a live working session of the group. A research team member presented the topics and the larger group was divided into smaller groups. Each group reviewed one script, discussed the content, and shared their recommendations back to the larger group. The research team took notes, compiled the feedback and selected salient themes to revise the scripts, with Alice’s family as the final arbiters of those revisions.

2.3.3. Step 3 Animated storyboards

A third-party animator was contracted who had previous with experience developing health-related animations [55]. The family and research team members met with the animator to discuss the content, scripts, and characters. The first step, and necessary precursor to developing the animations was the creation of animated storyboards, that include simple black and white images with limited animation and a crude soundtrack designed to convey content and timing.

Content for the draft animated storyboards was based on the premise that the intended audiences may not have had previous exposure to medication safety information. To bridge the gap between “information and action,” the team applied Fuzzy Trace [56] and Multimedia Learning Theory [57]. Fuzzy trace theory incorporates ‘gist’ representations that are simplified, and qualitative messages have shown to be more effective than verbatim details in conveying health related information [56]. These design choices include: combining animation and narration, incorporating retrieval clues, on-screen text positioned close to animations when used, and presenting words in conversational rather than formal style[57].

2.3.4. Step 4 Review of Draft Animated Storyboards to produce Draft Animations

Feedback on the animated storyboards was sought from both the EV and the DeRx Partnership leading to the development of draft animations. The research team elected to first present the video concepts in animated storyboards to EV stakeholders because it has been shown to be an effective tool to cross health literacy spectrums [58].

2.3.4.1. Feedback from Elder Voices

Senior center directors invited interested stakeholders to attend the focus groups at their respective centers. Two directors were active in the focus groups; the third simply facilitated the location. At least two members of the research team (research assistant and PhD qualitative researcher) were present at each meeting. Research staff confirmed stakeholder interest in participating in the study before starting the meeting. After signing consent, stakeholders were asked to complete a self-administered sociodemographic questionnaire. We showed the animated storyboards one at a time using a computer and screen projector. A research team member led a short discussion following each video viewing. The focus group discussion questions were developed by the research team and sought to prompt feedback and suggestions on content, language, and visualization. For the intent of addressing any possible power differentials and building rapport, the focus groups were conducted in a conversational manner. Stakeholders were given a handout of open-ended questions with a place for notes for each animation to ensure those less inclined to speak would have an opportunity to provide input. We took detailed notes during each focus group and also allowed stakeholders to hand in their notes. Focus groups lasted approximately 90 minutes and older adults and caregivers were given a $25.00 USD supermarket gift card.

2.3.4.2. Feedback from DeRx partnership

Similar to the EV focus groups, each group was shown the animated storyboards, and were given a handout with questions and a place for notes for each animation. The research team took detailed notes on their feedback to be reviewed for revision suggestions.

2.3.4.3. Analysis and incorporation of feedback

The research team who conducted the focus groups analyzed the above meeting notes using thematic analysis [59]. They met to compare notes from the discussion and compile answers to the responses on open-ended questions. The team members then met with an additional research team member to identify and categorize common themes for proposed revisions. In an effort to maintain coherence of the video messages, themes that were too tangential to the video subject were tabled for future projects. The suggested revisions were then given to family members [MBT, JST] who communicated their final decisions to the animator. In addition to content additions, feedback regarding color, movement and professional narration were included into the animated storyboards.

2.3.5. Step 5: Review of Draft Animations to Produce Final Animations

2.3.5.1. Feedback from Elder Voices

At the three senior centers, EV stakeholders were invited to view the draft animations that incorporated their feedback and suggestions from Step 4. Two members from the research team conducted the focus groups in the same format as Step 4. Qualitative feedback from the stakeholders was captured at the presentations and on the comment section of the focus group handouts.

In addition, the stakeholders were asked to complete a Likert scale Anonymous Participation and Satisfaction Questionnaire to assess for satisfaction with the participatory process and video development experience. Questions were generated from similar health related participatory research [53], and also addressed self-reported changes in knowledge and self-advocacy.

2.3.5.2. Analysis and Incorporation of Feedback

As with Step 4, the research team members who facilitated the focus groups met to review the notes. They analyzed feedback generated from the focus groups which was then relayed to Alice’s family members and communicated to the animator to create the final versions of the videos.

2.3.5.3. Analysis of Anonymous Participation and Satisfaction Questionnaire

A total of N = 37 (of 41 who attended) stakeholders completed the Anonymous Participation and Satisfaction Questionnaire on stakeholder knowledge, self-advocacy, and satisfaction with the videos and participatory process [53]. The results were compiled and analyzed using descriptive statistics.

Results

3.1. Elder Voices Stakeholders

A total of 53 (non-duplicated) stakeholders provided feedback on videos in focus groups at three senior centers. Characteristics of those who completed the demographic questionnaire in Steps 4 and 5 are shown in Table 1. Participation varied among the senior centers, from 5 to 27 in Step 4, and similarly in Step 5. It was the request of one senior director to maintain the integrity of the larger group (27) rather than divide into two smaller groups.

Table 1:

Stakeholder Demographics

	Step 4 (n=45)	Step 5 (n=39)
Age (years)*
Mean (SD)	69 (± 6.7)	70 (± 5.8)
Gender
Female	40 (89 %)	37 (95 %)
Male	5 (11 %)	2 (5 %)
Race
White (Not Hispanic)	15 (33 %)	12 (31 %)
Black or African American (Not Hispanic)	29 (64 %)	26 (67 %)
Multiracial or other	0 (0 %)	1 (3 %)
Marital Status
Married/living with someone	13 (29 %)	10 (26 %)
Never married	10 (22 %)	5 (13 %)
Divorced/separated	14 (31 %)	13 (33 %)
Widowed	7 (16 %)	11 (28 %)
Education
High school diploma or trade-school graduate	23 (51 %)	19 (49 %)
College graduate	22 (49 %)	19 (49 %)
Employment
Retired	36 (80 %)	36 (92 %)
Unemployed	0 (0 %)	1 (3 %)
On disability	6 (13 %)	1 (3 %)
Full- or part-time job	3 (7 %)	1 (3 %)
Income
<$30,000	9 (20 %)	11 (28 %)
$30,000–49,999	10 (22 %)	7 (18 %)
>$49,999	6 (14 %)	4 (11 %)
Missing/Prefer not to answer	20 (44%)	17 (43%)
Help reading hospital materials
Never	33 (73 %)	24 (62 %)
Sometimes	9 (20 %)	12 (31 %)
Often	1 (2 %)	1 (3 %)
A lot	2 (4 %)	1 (3 %)

^*Missing values for each category were only reported if over 10%

3.2. Revisions to Animated Storyboards to Produce Draft Animations Based upon Stakeholder Input

Table 2 summarizes the feedback that was incorporated into the draft videos in Step 4. Suggestions for improvement included: empower Alice, ask questions, involve family members, simplify language, increase diversity, and improve video quality. Comments and suggestions that were beyond the scope of the original video content were saved for potential future projects. Of note, the DeRx partnership debated at length the proposed terminology of “Never Med” that appeared in the second video. Concerns were raised regarding the use of an absolute term that might not be appropriate at a later point in life. The consensus was to keep the term and explore its practical application in future research.

Table 2:

Feedback and revisions to animated storyboards to produce draft animations (Step 4)

Feedback	Animation Revision(s)
Alice should be empowered  • “Alice needs to be stronger – we do not see ourselves in her”  • Show Alice “taking charge” – have Alice showing us what we should be doing rather than telling us	• Video conclusions emphasize steps patients can take to be prepared  • Images show Alice being proactive  • Alice speaks with active voice  • Narration was rerecorded with more active tone
Emphasize Ask Questions  • “Everyone should be aware that it is your right to ask questions – you are your best advocate.”  • Give examples of specific types of questions patients might ask	• Added the line, “I wish I had also asked questions about what I was prescribed.” (New Med Video)  • Statements about asking questions are framed in an active voice
Include Family and Friends  • Give your medication list to your family and/or healthcare proxy in case at some point you may not be aware of your medications  • “You should ask…” --- you are not always able to. Should change to “You or a family member should ask….”	• Included images of Alice and her family talking to doctor.  • Added “You may also want to give a copy to a loved one.” (Hospital Video)
Simplify Language  • Med rec / med reconciliation is too big of a word, needs to be in plain language	• Removed the term Medication Reconciliation and only focused on the term “never med” (Never Med Video)
Increase Diversity  • Include African American doctors and patients  • Include female doctors	• African American Doctor and patient were added  • Female doctors were added
Better Narration  • Alice should speak slower  • Alice’s voice sounds mechanical  • Alice’s voice sounds young	• "A senior friend of Alice with extensive skills in advertising and experience doing voice overs for radio commercials.
Characters  • Change what the doctor is wearing  • Add color to animations	• Doctor is depicted with tie and white jacket  • Color was added to all animations

3.3. Review of Draft Animations to Produce Final Animations

Table 3 summarizes the EV feedback on draft animations that was incorporated into the final videos in Step 5 (2.3.5). In addition, Box 1 details the main themes and the final title of each video.

Table 3:

Feedback and revisions to draft animations to produce final animations (Step 5)

Feedback	Animation Revision(s)
Characterization  • Make the African American man in the video have more energy and look less feeble	The African American character was made more robust
Medication Comments  • Patients are afraid to talk to their doctor so may stop taking medications secretly	“Always notify your doctor if you stop taking your meds,” was added to the script.

Box 1. Final Video Themes.

• Beware of New Medications – Your Life Depends on It!

  https://www.youtube.com/watch?v=YxQ-1eMHKVM&t=22s

  1. Ask questions about new meds (what, why, alternatives than meds);
  2. If you experience new symptoms, these could be drug problems; and
  3. Don’t stop until someone proves to you that it is not a medication side effect.

• Beware of “Never Meds” – Your Life Depends on It!

  - https://www.youtube.com/watch?v=mG6sMjhYwUE

  1. Put “Never Meds” on your allergy list;
  2. Don’t wait to show the doctor your “Never Meds”; and
  3. Check your allergy list before taking any new medication.

• Beware of Medications in the Hospital –Your Life Depends on It!

  - https://www.youtube.com/watch?v=05JBjiK-ZhY&t=3s

  1. Bring medication and allergy lists to the hospital;
  2. Know what the “pills in the cup” are for;
  3. The “right patient check” every time; and
  4. New symptoms could be drug problems.

3.3. EV Stakeholder Knowledge, Self-Advocacy, and Satisfaction in the Participatory Research Process

In Step 5, 37 of 41 stakeholders completed the Anonymous Participation and Satisfaction questionnaire related to the experience with the participatory research process including whether they reported an increase in knowledge and self-advocacy, and stakeholders’ satisfaction with the research process and video development [53]. Nearly all (95%) EV stakeholders reported perceived increase in knowledge (table 4). Regarding self-advocacy, a majority of the stakeholders (89%) indicated that they felt more comfortable having a conversation with their doctor about medications after participating in the CBPR process. Most were satisfied with the final animations (84%) and felt their feedback was reflected in the video revisions (76%). Nearly all (89%) would recommend the videos to a friend or family member (see Table 4).

Table 4:

EV Stakeholder Knowledge, Self-Advocacy, and Satisfaction in the Participatory Research Process

Stakeholders that Agree or Strongly Agree	Overall (n=37)
I learned something about medication safety	95%
I feel more comfortable talking to my doctors about my medications	89%
I would recommend these videos to a friend or family member	89%
I am satisfied with how the videos turned out	84%
I feel my ideas were heard and incorporated into the videos	76%
I feel I had a positive experience working with the research team	73%

In addition, qualitative feedback from focus group observations, notes and open-ended questions provided further detail of the participatory process. When asked to describe lessons learned, stakeholders pointed to the importance of self-advocacy strategies, which included staying informed, being assertive, asking questions, and talking to your pharmacist or doctor.

The EV stakeholders also stressed the need to keep their family informed and up to date on medication lists. The concept of “Never Meds” was particularly salient with all groups as a self-advocacy tool, one stakeholder (EV #14) noted, “That term ‘Never Med’ is quite meaningful to me…that label struck me as ultimately important… good new term… very poignant.” Another added (EV #7), “the new term ‘Never Med’ -- it conveys deeply between caregiver and family member,” implying that the term resonates with family members and caregivers, although it is unclear whether they would feel comfortable communicating with providers. As one stakeholder (EV #31) stated, “The video is presuming that we are all competent to do these things,” which stakeholders defined as ‘white coat anxiety’. Concerns about nurses and doctors not having the time to listen or answer questions also emerged. Stakeholders suggested providing sample questions to ask doctors or nurses. Additionally, the purposive sampling of the additional senior group yielded a large representation of African Americans and their feedback increased the diversity of characters in the videos, particularly in positions of empowerment.

Overall stakeholders felt satisfied with the CBPR process, although preliminary feedback from the introductory session necessitated an adaption in the conversation style, specifically, they wanted their stories heard. They responded favorably to video format improvements including, the new cadence and voice of the narrator, the animation and multi-cultural representation of the characters, and the repetition of main points expressed.

4. Discussion and Conclusion

4.1. Discussion

The objective of the study was to translate actionable lessons from the death of Alice Brennan into video animations to encourage patient-driven deprescribing among older adults. The research team, with members of the Alice’s family, Elder Voices, and the DeRx partnership, developed animated videos based on CBPR principles incorporating input and feedback from a range of stakeholders at multiple points in time. Each video highlighted important themes identified by Alice’s family that they believed could have saved her life. The development of video animations with older adults and their caregivers is an innovative strategy to encourage patient-driven deprescribing that appears to have potential.

EV stakeholders participating in the video development process reported increases in knowledge and self-advocacy, and an overall positive value from the participatory experience. It should be noted that the reported increases in knowledge and self-advocacy were likely due to a combination of the information provided in the videos, and participation in both the information session and focus groups. No inference can be made from these results regarding the effectiveness of the videos themselves.

The study successfully incorporated and shared lessons from Alice’s story. Although the family (with guidance from the DeRx Partnership) generated the initial scripts and preliminary prototypes, it was the input from EV that further developed the content and refined the videos so that they resonated with the intended audience – namely older adults and caregivers. The iterative process allowed EV members to provide critical feedback and suggestions including an empowered Alice, more engagement of family members, and the incorporation of more diverse animated characters. Qualitative feedback also identified older adults concerns about their ability to approach medical professionals and whether or not they would be heard. Further, the videos were designed to reach a wide audience, and as such incorporated simple representations of information [53], accessible language and optimal exposure to verbal and pictorial representation of critical concepts [60].

The process of CBPR endeavors to educate and empower individuals to implement change [38]. Survey responses suggested an increase in reported self-advocacy, but the preponderance of communication concerns with health care providers could suggest a disconnect between empowered verbalization in a group setting versus actual communication in a clinical setting. This is supported by previous research that patients may not feel empowered to speak up [61]. In CBPR, authentic engagement with stakeholders should lead to general satisfaction and a sense of value and ownership in the process [62]. This was evident in the study whereby the majority expressed satisfaction and value from the process, had a positive experience and felt their voices were heard. In addition, having an engaged champion can increase participation [52], and this was reflected in the 2 senior programs that had an active staff to promote the program (9 and 27 stakeholders) in comparison to the Senior Center that merely facilitated the room and technology (only 5 stakeholders).

Fidelity to CBPR in its purest form states participants are involved in all stages of the process, including original content development [43] [46]. Our participatory framework reflects a medium level of involvement [47] where stakeholders were engaged in stages to accommodate the heterogenous perspectives and level of health literacy. The key informants in this study [MBT and JST], worked jointly with the academic members of the team from the beginning to identify the patient-driven deprescribing themes, to secure funding and to develop all aspects of the research plan. Although EV stakeholders were not integrally involved in the initial content development, their input supplemented the content and their critical feedback strengthened and informed the final videos. In line with previous research, our results demonstrate some of the challenges of balancing a research agenda and community participation [52]. We found that tracking feedback and specific changes implemented, advocating for older adult perspectives at team meetings, and creating a Participation and Satisfaction survey, were effective strategies to navigate this tension. Literature on older adults as “co-researchers” emphasizes recruiting adults who are interested in research [50], but often this interest falls on a continuum. We hope that giving older adults further opportunities to participate in research with EV will allow individuals with varying degrees of interest and expertise to get involved.

The senior groups that participated in this study were established fitness and Aging Mastery Programs that could conceivably have higher levels of health literacy. In addition, the majority of the stakeholders (92%) were women and men may have different preferences for communication. As a result of these limitations, the reported impacts could be different. Future efforts should be made to actively recruit and engage men and marginalized populations to ensure that deprescribing strategies are generalizable to diverse populations.

Closed ended survey questions have been used to assess the process and impacts of CBPR [62]. While this study was able to generate survey data; the study population was too small to conduct meaningful quantitative analysis beyond descriptive statistics.

Lastly, we note that narrative intervention using a single case study has strengths and limitations. While, storytelling and first-person narrative have proven to be memorable and impactful [38, 39], a single case also limits the scope of learning. While the Alice Story included broad learning topics, future videos will need to address additional critical concepts of patient-driven deprescribing and medication safety. CBPR by design provides locally relevant narratives that may limit the transferability to other contexts [43]. This is an important first step and additional studies with diverse groups can lead to more generalizable findings.

4.2. Conclusion

Patient-driven deprescribing initiatives are an innovative strategy to address polypharmacy in older adults. Animated videos have shown success in conveying health information to a broad audience in various domains [33]. In this study we were able to develop, with a high degree of stakeholder engagement, a series of animated videos designed to provide critical information on the risks of PIMs and polypharmacy and empower older adults to advocate for themselves. Future studies are needed to examine how best to implement video interventions to most effectively promote patient-driven deprescribing practices and improve health outcomes among older adults.

4.3. Practice Implications

This research adds to the current deprescribing literature by introducing an innovative strategy to address polypharmacy and PIMs in older adults. In this study we describe the community-researcher partnership that led to the development of a series of animated videos. These tools were designed to: 1) provide critical health education to patients and providers related to the risks of polypharmacy and 2) empower patients to advocate for themselves in multiple healthcare settings. This research is a critical first step to increasing patient-led discussions that reduce the incidence of polypharmacy and potentially inappropriate medication use among older adults.