Co-Designing Evidence-Based Videos in Health Care: A Case Exemplar of Developing Creative Knowledge Translation “Evidence-Experience” Resources

Introduction

The need for engaging, accessible and informative resources for the public is being recognized across industries as diverse as finance, education, environmental studies, and increasingly, in the health sciences (Bradford & Bharadwaj, 2015; Mondal et al., 2016; PR Newswire, 2013; Tremblay & Jayme, 2015). In a climate rife with misinformation, the public—as knowledge users—face the onerous task of determining the legitimacy of a vast range of information sources. Health researchers face a comparably onerous task, increasingly required to consider knowledge translation (KT) plans and methods to impart research evidence in meaningful and impactful ways. With video-based content expected to account for 82% of all consumer Internet traffic by 2022 (Cisco, 2020), health researchers have an opportunity to leverage the video-based learning economy to communicate evidence-based information to knowledge users to support knowledge, awareness, and decision-making. However, integrating diverse sources of research evidence, including qualitative evidence of patient experience to develop such resources has not been well described in the literature. This potentially limits the meaningful integration of qualitative evidence into evidence-based resources.

Indeed, while misinformation is a predominant threat to evidence-based decision making, another less commonly considered threat is evidence misalignments. Early conceptualizations of evidence-based medicine forwarded by Sackett and colleagues (1996) acknowledged the relevance of patient preferences as well as clinician experience, with the orientation of this integration occurring in the clinical environment. How qualitative evidence is used to inform evidence-based resources has received less attention. We build upon this and coin the term evidence misalignments to reflect the often-overlooked differences between the valued forms of research evidence dominant in health care and KT, and evidence of lived experience as expressed by the individual. The former reflects evidence derived from the population level and often “controlling” for context (e.g., randomized controlled trials) and then extrapolated to the individual level, frequently without sufficient consideration of the unique context of an individuals’ lived experience. The resulting misalignment is another type of gap requiring consideration in KT initiatives, which is understood here as the generation, synthesis, exchange and application of knowledge for and with diverse stakeholder groups (Canadian Institutes of Health Research, 2016). Our position aligns with a growing movement toward incorporating multiple perspectives of evidence in KT (Harvey & Kitson, 2016; Kitson, 2009; Kitson et al., 2008). In this paper, we describe how we addressed such misalignments and integrated qualitative evidence of older adults lived experience through the co-design of four video-based resources in the context of a transdisciplinary Centre of Research Excellence (CRE) in frailty research predicated on collaborative KT (Archibald, Ambagtsheer, et al., 2017; Archibald, Kitson, et al., 2017; Kitson et al., 2013). We describe the research context of creative KT then focus on a case exemplar of co-developing video resources, framed by Boyd’s (2010) co-design framework.

Context: A Case Exemplar of Video-Resource Co-Design for Frailty

In healthcare, frailty carries a distinct meaning of age-related vulnerability to external stressors resulting in poor health outcomes (Hoogendijk et al., 2019). This definition does not reflect the personalized meanings of aging held by individuals, or capture the breadth of impact on individual’s daily life. Complexities in the medical identification and management of frailty mirror the complexities expressed by aging individuals who may or may not identify with frailty. Our previous research exploring perceptions of frailty and healthy aging with older South Australians demonstrated that many frailty-related concepts are frightening and poorly understood (Archibald et al., 2018, 2020), replicating previous studies (Schoenborn et al., 2018; Warmoth et al., 2016). Consequently, older adults are unlikely to discuss frailty with health care providers or to be open to the concept of frailty screening, based on associations of frailty with the end of life, being broken and irreparable, and because of stigma and shame associated with the term (Archibald et al., 2020). However, research demonstrates that frailty is not an inevitable result of aging. With early identification and appropriate management, frailty can be prevented, delayed, or reversed for some individuals (Cameron et al., 2013; Kim et al., 2015; Li et al., 2010; Ng et al., 2015; Puts et al., 2017; Tarazona-Santabalbina et al., 2016). Delivering this and other key messages identified through our foundational research presented a formidable KT challenge.

Recognizing the pressing need for engaging and meaningful mobilization of diverse evidence sources around frailty and healthy aging in South Australia, we co-designed four creative video-based resources with and for older persons and their carers in South Australia. The aims of these resources are to: (1) incorporate the best available evidence on frailty and healthy aging; (2) reflect and honor the diverse experiences and narratives of older South Australians along the frailty trajectory; and (3) respond to a documented need for such resources as identified in our previous research with the National Health and Medical Research Council (NHMRC) funded CRE in Frailty and Healthy Ageing.

Methods: Process of Development

Developing the frailty videos aligned with Boyd’s (2010) six steps of co-design, including Engaging, Planning, Exploring, Developing, Deciding, and Changing. Each component of the co-design corresponds with the five specific steps below, as indicated in brackets. Except for steps 1 and 5, the steps occurred iteratively, enabling feedback to inform further development and revision of the video resources.

Establishing Teams: Frailty Resource Development Team and Consultation Cohort (Engaging, Planning)

A group of nine members was purposively selected on the basis of their gender, experiential, and disciplinary diversity, and formed the Frailty Resource Development Team (FRDT). The purpose of the FRDT was to enable a variety of experiences and preferences to be integrated into the co-design of the video resources. The FRDT was sampled from the established network of CRE investigators, and through a formal recruitment process initiated by the lead investigator MA through the Health Consumers Alliance of South Australia (SA) in September–November 2018. The FRDT consisted of three older adults recruited through the health consumer alliance, a professional filmmaker, a third party animation company, the lead investigator MA, and an additional FRDT member who has an arts background (ML).

Recruiting older adults into the FRDT involved a position posting and receipt of expressions of interest regarding each person’s interest in frailty and healthy aging, and relevant experience(s) with creative processes and patient/public engagement. Eight applications were received; three older adults were interviewed and offered positions. These individuals were selected based on their varied experiences as health consumer representatives on various committees, valuable lived experience as older people with chronic health conditions, professional and personal experience as carers, and personal qualities (e.g., communication skills, enthusiasm, open-mindedness, creativity). In addition to the project lead, five academics and clinicians from the CRE were purposively invited to participate (Table 1). Attributes and designations of the FRDT are detailed in Table 1.

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Table 1.

FRDT Attributes and Designations.

Team Member	Affiliation and Representation	Justification for Inclusion
Consumer 1	Lay public & carer	Combination of lived experiences as an older person with multiple co-morbidities; experience as a carer for frail older persons; advisory panel experience; previous professional experience as a physiotherapist for older adults; engaged community citizens; attributes: creativity, open communication; knowledge of issues around access to services and information
Consumer 2	Lay public & carer
Consumer 3	Lay public
Clinician/academic 1	Occupational Therapy	Relevant clinical experience as a therapist with older, often marginalized, individuals; research experience with CRE team in frailty; holistic perspectives on health and illness; personal experience as an artist.
Clinician/academic 2	Orthopedic Surgery	Relevant clinical experience as a surgeon with older populations often affected by conditions pertinent to frailty (e.g., sarcopenia, osteoporotic fractures); research experience with CRE team in frailty; holistic perspective on health; interest in the arts and video
Clinician/academic 3 (lead investigator)	Nursing	Relevant clinical experience as front line nurse; research experience with CRE in frailty team, including specialist in collaborative KT and creative (arts-based) resource development; personal and professional experience as an artist
Academic 1	Nursing	Research experience with CRE in frailty team, emphasizing clinical effectiveness of frailty interventions through systematic reviews pertinent to the evidence base underlying video production
Academic 2	Psychology, Nursing	Research experience with CRE in frailty team with interest and experience in communication; previous visual arts training
Academic 3	General Practice	Research experience with CRE in frailty with focus on frailty identification in primary care

The FRDT involved the lead investigator (a professional artist and arts-based KT researcher), one FRDT member with an arts background, a professional filmmaker, and a third party animation company. An extended consultation cohort was then established in collaborative partnership with the Council on the Aging South Australia (COTA SA), an organization committed to advancing the rights and interests of Australians as they age. The purpose of the extended online cohort was to receive additional feedback from older persons and their carers on key components of the video-resources throughout the co-development process (e.g., key messages), thereby reflecting greater experiential, socio-demographic, and ethnic diversity than possible through the in-person advisory cohort. The online cohort of 20 individuals was contacted twice throughout development (detailed under feedback cycles, below). Resulting from the FRDT and extended consultation cohort was a mixed stakeholder group consisting of older adults (healthcare consumers), carers, clinicians, and academics/artists, strategically identified to facilitate the meaningful co-design of the video materials with maximum input from knowledge-user groups.

Learning From the Case Example: Opportunities and Challenges

Co-design inclusive of multiple stakeholder perspectives permits a higher extent of creative ideation than what is possible with any one individual. Ideally, from using this approach, the engagement process and associated resources produced may be more meaningful and more likely to influence behavior change; satisfaction with resources and care provision may be improved; and participants may derive a sense of pride and accomplishment, along with knowledge and skills, as a by-product of contributing to the research process (Graham et al., 2018; Slattery et al., 2020). Aligned with the ethos of community-based participatory research, the co-production of such knowledge is critical to its integration in the attitudes, behaviors and decisions of stakeholders, as well ensuring services and policies reflect end-user perspectives (Kwan & Walsh, 2018). Individuals invariably speak from their unique standpoint, reflecting the formative forces of life experience, disciplinary training, perception, cognition, and emotional responsiveness. By purposefully constructing intra-team diversity, there is a higher likelihood that a broader triangulation of perspectives can be achieved (Archibald, 2016). Narratives, in their inherent complexities and ambiguity, benefit from a diverse range of interpreters during their formation, as this reflects the inevitabilities of diverse interpretation facing the narratives once in the public sphere. Indeed, the breadth and diversity of the team is among of the key factors differentiating film from other academic projects as noted by Gandy (2009) in his reflections on filmmaking. Others, such as resource constraints (e.g., budgetary, time), complexity and ranges of responsibilities involved, and the corresponding need for flexibility, were also identified as key lessons. We note additional lessons and corresponding strategies of use to consider when engaging in video-based co-design.

The potentials of co-design are best achieved when engagement moves beyond tokenistic involvement characterized by surficial consultation, toward entwined collaboration and co-production wherein stakeholders can influence the direction of the process, direct decision making to authentically contribute a shared-vision, and thereby increase the likelihood that their voices are reflected in both the process and product (Greenhalgh et al., 2016; Ocloo & Matthews, 2016). Skilled facilitation by an individual experienced in co-design and attentive to these differentials; explicit determination of group values from the onset of collaboration indicating the prioritization of stakeholder perspectives over academic priorities, and capacity for individuals to shape decisions can go some way toward mitigating the power imbalances inherent in the research process (Kwan & Walsh, 2018) and were perceived as beneficial to our group process and outputs. Other practical strategies aimed at equity employed in this project involved forthright discussions regarding meeting times and locations, and utilizing methods of communication driven by the unique needs of the group; reflecting in part, the flexibility required by the team and team leader, coordinator, or facilitator (Gandy, 2009). Considerations specific to ethical review may also arise and include questions of when engagement becomes research (Goodyear-Smith et al., 2015), as may tensions between the function of engagingly designed information “products” that are also contingent upon aesthetics and form (Lee, 2008).

In addition to the formidable and longstanding challenge of attending and negotiating power relationships in participatory and co-design research are required attentiveness to cultural diversity and the resultant need for sensitivity. In the context of co-designing evidence-experience resources leading from foundational research, many of the considerations with representation are dictated by the composition of the original participant sample. Consistency between the resulting representation (i.e., in video) and the research underpinning the representation and directing its narrative (e.g., qualitative research) becomes an issue of quality, with at a minimum, direct implications for credibility (i.e., believable perspectives of participants), transferability (i.e., degree to which experiences can be generalized), and dependability (i.e., are decisions to extrapolate from the original contexts of participants to the video resource clear and justified?) (Fitzgerald & Lowe, 2020; Lincoln & Guba, 1985). In the context of the video-resources produced, our team was sensitive to the distinction between the need for resource(s) that reflect the experiences of diverse cultures, and our ability to create such resources based on the representation achieved in our foundational research. We sought to balance this consideration with the potential reach that translating the videos could have for non-English speaking South Australians. As such, through our collaborative process, we determined that the animation video would be the most amendable to translation. We then had the video professionally translated into Mandarin to reflect the primary non-English language spoken by older South Australian minority groups. An additional consideration however is the imperative to consider the positionality of collaborators employed in the methods of film production (e.g., film production crew), whose cultural backgrounds, knowledge and embeddedness can bring notable perspective and practical know-how to the project. Such locality can also help avoid losing the context of the material in post-production (Gandy, 2009).

Within the context of health narratives and evidence-based resources, honoring participants’ narratives while recognizing that these experiences may not reflect “ideal” (i.e., evidence-based) management scenarios (a disconnect previously considered as “balancing the actual with the ideal”; Archibald et al., 2018) is paramount to this form of resource development. Early in the paper, we proposed the term “evidence-experience resources” to reflect such epistemological complexities raised in the legitimization and prioritization of evidence sources that invariably needs to occur in considering evidence-based narrative videos, or with arts-based KT work more generally. Such resources may offer an approach to rectifying the “evidence misalignments” encountered when trying to make gold-standard evidence “fit” with participants lived experience.

Indeed, among the most predominant challenge faced relates to the types of evidence integrated, and the procedural implications that this raises. A predominant feature of qualitative evidence is that it is located in the particular; the generalizability of experience of not a fault or indicator of quality, but an attribute. Yet, it is precisely this attribute (a strength of the methodology) that has posed epistemological challenges for practitioners working in the evidence-based practice and KT movements, who seek to move beyond mobilization of lived experience evidence in one-to-one clinical encounters toward a broader (yet legitimate) communication and application of qualitative findings. We have come to explore how such sources of evidence can provide the narrative structure to deliver “other” forms of evidence. Specifically, evidence derived from what is commonly thought of as gold standard in evidence-based medicine and KT, such as randomized controlled trials (RCTs) and systematic reviews (SRs) of effectiveness. These were the sources of evidence that enabled us to determine misalignments and justify decisions. However, RCTs and SRs are founded in notions of external validity, raising for us a fundamental epistemological challenge with procedural implications—one that we do not rectify but do engage with. We considered tradeoffs between the potential benefit for Australian viewers, afforded by locally based and specific examples of resources (e.g., COTA; South Australian-based exercise programs) for instance, with the lack of generalizability for others outside of South Australia. With sensitivity to this tension, we elected to include more context-specific resource based examples within the comments or descriptions sections of posted videos rather than within the videos themselves.

Managing the expense of developing and editing video-based resources is a key challenge and one noted by others (e.g., Gandy, 2009), especially when incorporating feedback from multiple stakeholders in the context of limited budgets. One potential means of addressing this issue is to ensure that the aims and scope of the project are clearly developed in consultation with stakeholders right from project commencement. Further, using a gradated multiphase process of development with multiple touch points enables recourse should co-designers provide input that would require substantive revision to the resource after it is at an unretractable stage. Ensuring appropriate collaborative brainstorming and storyboarding is necessary to ensure checks-and-balances are in place to prevent costly revisions from oversights. Ongoing email communications wherein specific issues are identified for collaborative problem solving through feedback cycles were crucial in this respect. Ensuring flexibility when working with external providers such as videographers is critical; practical strategies such as using blank “placeholder” slides, or strategically sequencing content (e.g., presenting material in likely need of modification as the opening or concluding scenes in a video) may help prevent costly revisions.

Conclusion

This article has presented a detailed exemplar of co-designing video resources based on diverse evidence sources in order to increase public and health service provider awareness about frailty, with the aim of illuminating the process and key considerations for those engaged in similar endeavors. Underpinning this work is a belief in the power of storytelling as an innate aspect of our human experience, expression of self, and means of learning and relating to the experiences of others. As we (and others) seek to leverage the accessibility of technologies such as video to support and maximize our research and dissemination efforts, we are also reminded that “there is nothing that expresses the roundness of human beings more than storytelling. Stories are the highest technology of being” (Okri, 2015, p. 7). With the power of stories in mind, we sought to explicate an innovative process involving the integration of lived experience evidence with gold-standard evidence from other sources as a novel contribution of this work. We foresee this as a useful contribution for other researchers and practitioners working toward evidence-based practice within an increasingly experience-oriented health service.

We explicated a structured co-design process to develop these video resources, and to bring to life the stories of participants in a relatable manner. Although the benefits of a co-designed process in achieving this aim are many, such processes are not without their challenges. Overcoming these challenges requires extensive forethought throughout project planning and flexibility throughout project execution, with all the commensurate investment in time and resources that this level of attention entails. Even still, certain challenges—such as those reflecting power and ethical considerations that are inherent to research processes and temporally situated (and hence difficult to completely uncover)—are unlikely to be completely overcome but merit—at a minimum—acknowledgment, engagement, and effort toward mitigation. We believe that such investments are well worth the effort if co-designed resources are to fulfill their promise of modifying perceptions, encouraging evidence-aligned health behaviors; challenging misconceptions resulting from socially constructed knowledge and the proliferation of misinformation within society; and reducing the misalignments between user experiences and what is often considered gold standard evidence. Such achievements are best considered in tandem with the processes that gave way to their production.

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