How can equity, diversity, and inclusion (EDI) principles be incorporated into research excellence with industry and community partners? Lessons learned from Canada and Australia on projects with a dementia focus

Abstract

Background

The rapid advancement of gerontechnology, technologies for older adults, needs a collaboration that integrates the efforts of researchers, industry and community partners. Multisector collaboration fosters a holistic view of technologies, merging industry expertise, academic rigour, and the lived experiences of older adults and caregivers. This paper explores the role of Equity, Diversity, and Inclusion (EDI) perspectives in Patient and Public Involvement (PPI).

Methods

We present two case studies from Canada and Australia. Study One involves a dementia television project, and Study Two is an innovative rural dementia care project. Data sources included transcripts of the case studies’ focus groups, research meeting notes, and associated study publications between 2021 and 2023 and 2016–2024, respectively. Utilizing Rolfe’s reflective model, we reflected on lessons learned regarding challenges, strategies, and their implications for future research. Our analysis focused on two questions: (1) What were the common challenges of partnering with industry and PPI in the research process? And (2) How can EDI be applied to help overcome those challenges?

Results

Thematic analysis identified five common themes of challenges and ten practical strategies. The challenges are (1) experiential bias, (2) underrepresentation, (3) communication gaps, (4) mistrust and (5) power dynamics. Based on the lessons learned, we identified ten practical strategies using EDI principles: (1) seek diverse representation, (2) establish transparent agreements, (3) adopt inclusive language and cultural sensitivity, (4) apply flexibility to learn and adapt, (5) embed team reflection (6) take time to build trust and relationships, (7) facilitate meaningful engagement, (8) provide equitable recognition and opportunity, (9) foster a respectful environment for knowledge transfer, and (10) cultivate a long-term sustained relationship.

Conclusion

The older population is diverse, and their needs are complex. EDI considerations contribute to fostering research excellence and maximizing the potential of PPI to develop technologies to improve aging experiences that truly meet the diverse needs of older adults for societal impact. Multisector collaboration requires clear communication and intentional efforts to build trust. EDI considerations should be embedded at every stage of the research process. This paper outlines common challenges, strategies, and implications as practical tips for future research and practice.

Plain language summary

Background

The development of technologies for older adults needs a collaboration that integrates the efforts of researchers, industry and community partners. This paper explores the role of Equity, Diversity, and Inclusion (EDI) perspectives in Patient and Public Involvement (PPI).

Methods

We present two case studies from Canada and Australia. Study One involves a dementia television project, and Study Two is an innovative rural dementia care project. We reflected on lessons learned regarding challenges, strategies, and their implications for future research. Our analysis focused on two questions: 1) What were the common challenges of partnering with industry and PPI in the research process? And 2) How can EDI be applied to help overcome those challenges?

Results

We identified five common themes of challenges and ten practical strategies. The challenges are (1) implicit bias, (2) underrepresentation, (3) communication gaps, (4) mistrust and (5) power dynamics. Based on the lessons learned, we identified ten practical strategies using EDI principles: (1) recruit for diverse representation, (2) establish transparent agreements, (3) incorporate inclusive language and cultural sensitivity, (4) apply flexibility to learn and adapt, (5) embed team reflection (6) take time to build trust and relationships, (7) facilitate meaningful engagement, (8) ensure equitable recognition (9) foster a respectful environment for shared learning, and (10) cultivate a long-term sustained relationship.

Conclusion

This paper outlines common challenges, strategies, and implications as practical tips for future research and practice.

Background

Creating useful and usable gerontechnologies for healthcare requires meaningful partnerships of researchers, industry, and users (community partners) in the co-design process [1, 2]. Gerontechnology denotes the study that links technologies to the aspirations and needs of aging and aged adults [3, 4]. Funders such as the Natural Sciences and Engineering Research Council of Canada (NSERC) [5] are committed to supporting inclusive research as they increasingly recognize the need to involve users in gerontechnology research to drive innovation. The collaboration involving diverse perspectives of people from multiple sectors is more likely to result in a more comprehensive understanding of the problem than if sectors innovate in their traditional silos [6, 7]. This approach requires collaboration among industry partners, academic researchers, older adults, and patient and family communities [8].

Academic researchers contribute rigorous research methodologies, evidence-based findings, and theoretical frameworks that underpin technology design and evaluation [9]. They are expected to offer critical insight into multi-dimensional factors influencing technology adoption among older adults and its sustainability. They provide the resources to transform academic research into tangible benefits of products and services, such as enhancement in products and services to better accommodate to older adults and development of co-design [9–11]. Industry partners are essential for navigating market dynamics and ensuring that aging care technology is innovative, timely, and viable.

Crucially, the direct involvement of older adults and caregivers ensures that the developed technologies align with the actual needs and preferences of end-users. Older adults and caregivers must be at the forefront of technology development. They offer lived experience perspectives to inform the practical utility of technologies in their daily lives, reflective of their heterogeneous and complex needs [1].

Older adults and their caregivers can provide invaluable feedback on usability, design, and functionality in iterative development processes. The collaboration across these sectors facilitates a multidimensional perspective on technology development, resulting in a transdisciplinary approach to research. Transdisciplinary research goes beyond interdisciplinary approaches, encouraging the active involvement of researchers, healthcare professionals, technology experts, and community users to join the research for solutions that enhance the well-being of older individuals. It bridges gaps between academic, clinical, and technological domains, fostering a holistic understanding and application of technology in aging care. It promotes an environment where practical application meets rigorous research and where the real-world experiences of older adults and caregivers guide the innovation process.

There is a body of literature about Patient and Public Involvement (PPI) in research. For example, The Australian Clinical Trials Alliance’s [12] Involvement and Engagement Toolkit describes how researchers can involve patients in different phases of clinical research. Greenhalgh et al. [13] reviewed 65 health research studies and identified five Patient and Public Involvement (PPI) model types: power-focused, study-focused, priority-setting, report-focused, and partnership-focused. Kaisler and Missbach [14] recently published a ‘How to’ guide on implementing involvement activities with PPI in research projects. Further, there are studies introduced approaches to enhance researchers’ partnership with community or industry in the field of AgeTech. For example, Genge et al. [1] mentioned partnering directly with organizations with established relationship with end users in the process of agetech co-production; other researchers suggested using nontraditional methods, such as in-depth interview, photovoice, and deliberative dialogues for a meaningful engagement with partners [2]. However, literature is absent discussing practical strategies for academic researchers to achieve a fulsome partnership adopting Equity, Diversity and Inclusion (EDI) with patients, the public, and the technology industry and community partners.

According to the Canadian federal research funding agency [15], EDI refers to principles for creating fair, respectful, and supportive environments in research. Equity refers to removal of systemic barriers, ensuring that everyone has opportunity to participate in research. Diversity acknowledges the presence of differences within a group or society. This can include differences in race, gender, age, ethnicity, disability, sexual orientation, and other attributes that make individuals unique.Inclusion ensures that everyone feels valued and included. It is about creating culturally safe environments where diverse individuals can fully participate and contribute.

As researchers, we can integrate EDI [16] in technology research to meet the societal needs of aging populations. Addressing systemic barriers in aged technology research is crucial to harnessing the full potential of diverse talents in this field [17]. For example, the technology industry does not conventionally collaborate with academics, healthcare providers, and older people in product design and deployment [9]. In the past, the aging care technology industry designed and deployed technology products. Such a silo approach often contributes to non-adoption and waste [18].

These barriers often stem from biases, limited access to resources, and policies that inadvertently exclude certain groups, hindering the advancement and inclusivity of research [19]. Overcoming these challenges is essential to foster a more equitable and innovative environment, ensuring that the insights and contributions from diverse groups of individuals enhance the development and application of technology for older adults. This is particularly important in transdisciplinary research, which comprises researchers from diverse disciplinary backgrounds and a wide range of stakeholders (technology industry companies and older adults) as research partners and collaborators [20]. An EDI-focused approach to technology innovation for aged care is critical but largely absent in the literature. An inclusive environment in research partnerships is essential. Discrimination, micro-aggressions, biases, inequitable support, lack of recognition, ableism and racism all can create harm and trauma, negatively affecting a team member’s ability to contribute to the work openly and thoroughly [21]. Inclusion requires consistent commitment and effort so that all team members feel supported. Lead researchers and primary investigators play an essential role in modelling and setting expectations within the team across sectors. An inclusive environment in research partnerships is important for fostering collaboration. Ensuring equity, diversity, and inclusion (EDI) allows team members from all backgrounds to contribute their perspectives and expertise fully [15].

Transdisciplinary research may present challenges such as extended timeframe and the need for additional financial resources, power imbalance, tensions between researchers and end-users, and maintaining research rigour while incorporating end-users preferences [18]. To date, the conceptual understanding and justifications for applying EDI in research are still underexplored [22]. There is a significant gap in practical guidance particulary in transdisciplinary projects with industry and community partners. To address this, this paper aimed to contribute the knowledge of applying EDI in real-world research. Using two case studies, we reflected upon the challenges we faced in applying EDI in research. The authors are Canadian and Australian researchers and trainees working with industry and community partners in aging technology studies. The lessons learned in our work can support capacity-building among researchers. In response to the pressing need for practical guidance on EDI implementation within the ambit of aging care technology research, this paper discusses the nuanced challenges and strategies vital for fostering such multi-sectoral partnerships. This discourse aims to articulate these complex challenges and propose actionable strategies to build research capacity, encourage industry and community engagement, and amplify the impact of innovations in aging care technology.

Case Study 1: the TV study in Canada

This project was conducted in the setting of a university-based research lab, Innovation in Dementia and Aging (IDEA) Lab, co-led by patient and family partners as co-researchers in Vancouver, Canada. Patient partners are people with living and lived experiences of dementia. Family partners are family caregivers of a person living with dementia. This research highlights the importance of industry partnerships in dementia technology research. From January 2022 to December 2023, our project involved co-creating, implementing, and evaluating dementia-friendly videos (Zinnia TV) in a hospital and a long-term care home [23–25]. The study was selected to be in clinical settings instead of home settings because currently, most studies on dementia-friendly videos were in a home setting and conducting the study in a clinical setting could fill the knowledge gap. Our team included four industry partners, four patients, four family members, healthcare providers (one nurse and one rehabilitation staff), one researcher, and four trainees. Zinnia TV is an industry partner offering dementia-friendly TV videos designed for people with moderate to severe dementia. The videos are dementia-friendly because they have a slower pace and do not have complicated content, which suits the cognitive abilities of people living with dementia. They are called “TV” videos because TV is one of the major devices showing them. However, the the videos can also be shown on other devices such as tablets and projectors. Our patient and family partners actively generated ideas and co-designed additional culturally diverse videos to meet the needs of persons living with dementia. The process involved regular discussions and an iterative approach to ensure the results benefit the community of people living with dementia. The lived experience expertise of patient and family partners was prioritized to inform the features of the videos. For instance, these dementia-friendly TV videos are short (5 to 15 min), presented slowly, featuring health promotion and positivity. Subtitles and questions were provided to engage the video viewers. The videos facilitate social engagement between people with dementia and their caregivers while stimulating memories. The topics covered in the TV videos aim to provide comfort and meaningful activities; they include animals, nature, and interactive games. They can be accessed through various mobile applications like tablets or smart TVs. One distinctive feature of Zinnia TV videos is their focus on content supporting people with moderate to severe dementia (a marginalized population) in performing activities of daily living (ADLs), such as drinking water, brushing teeth, eating, and face washing. These videos provide visual and audio cues, creating an appealing tone to help people with dementia follow the activities, enabling their independence. When the videos are projected onto large screen TVs or walls, they offer high-quality visuals and audio-immersive experiences for the audience. This study received approval from the University of British Columbia.

Case Study 2: rural dementia care in Australia

This project fosters collaboration among researchers, industry and community partners commenced a decade ago in Victoria, Australia. As a university with multiple regional campuses, it is critical for researchers to engage with local communities. Our team started building relationships with local rural communities in 2014. In 2016, the SMART (Small Rural Health Research Team) partnership of 10 rural health services and two universities underlined the knowledge exchange, research translation and ensuring wider research uptake by its end-users in the community [26]. Its goal is to promote rural health as a space of innovation and quality research. We consulted healthcare providers and communities about their dementia service needs [27]. To meet the needs of rural dementia caregivers, we launched Virtual Dementia-Friendly Rural Communities (Verily Connect) in 2017 [28] Verily Connect was an innovative project to increase support for rural caregivers of people with dementia and memory problems. The project leveraged online technologies and a virtual chat group to connect caregivers, creating virtual dementia-friendly rural communities across 12 rural locations in Victoria, New South Wales and South Australia. The investigator team comprised interdisciplinary researchers and community health services leaders [29]. They were supported by a project advisory group representing people with lived experience of dementia, health service providers, dementia peak body, multidisciplinary academic and clinician researchers and technology developers.

The foundational work of Verily Connect’s technological infrastructure was established through collaborative efforts involving both rural consumers, facilitated by Dementia Australia, and service providers. Complementing these endeavours, inclusive public forums were convened to solicit additional perspectives, needs, and insights from caregivers, service providers, and community stakeholders. A sustained commitment to co-design and co-production methodologies persisted throughout the project lifecycle, enabling iterative refinement of the VERILY model based on accumulated feedback and challenges encountered during implementation. This iterative process was characterized by ongoing engagement with pivotal stakeholders, encompassing rural community members with lived experiences of dementia, volunteers, local organizations, Dementia Australia, Carers Australia, and Commonwealth, state, and local government levels, alongside rural service providers [30].

Upon completing the Verily Connect trial [31], project investigators disseminated insights gleaned from each community through a series of public forums, fostering knowledge exchange and enhancing transparency in the project’s outcomes. The resource is available online and has been adopted for wider dissemination in the Carer Connect project led by our community partner, Heathcote Dementia Alliance.a.

Methods

This paper employed Rolfe’s [32] reflective model to systematically examine the experiences and insights gained during the Dementia TV and Rural Dementia Care projects. Rolfe’s model facilitated a structured reflection on our practices and interactions, allowing us to identify key challenges, opportunities, and implications for future collaborative research. Guided by the Rolfe’s model, we asked three questions: (1) What – What we have experienced? (2) So what - the implications the experience has for our actions, (3) Now what – based on what we have learned, what can be done for growth in the future?

The Canadian team involved four industry partners, four patient partners, four family partners, healthcare providers (one nurse and one rehabilitation staff), one researcher, and four trainees. They were involved in different stages of this paper: paper planning, participating in meetings, and data generation and analysis. The Austrialian team included a member of the Verily Connect chief investigator team, a representative from the project management team, a health service partner, and a community and research translation partner. As co-authors of this paper, informed consent was not required for members in both teams, including patient and family partners. They were “researchers” and co-authors, not “participants.

Data collection

The data collection process for both studies was multi-faceted, incorporating various methods to capture a breadth of experiences and insights. We organized focus group sessions, individual semi-structured interviews, and surveys in the TV study and reflective practice forums in the Rural Dementia project, each carefully structured to encourage open dialogue among team members. These sessions were designed to gather diverse perspectives from industry partners, healthcare providers, patients, family members and caregivers. We asked members of the research team, including industry partners, older adults and their families in local communities, and trainees, about the challenges and strategies used in the research and what could be implemented to improve the research experience. Weekly and monthly 30-minute to one-hour research meetings served as a collaborative platform for ongoing reflection and discussion. These meetings were critical in tracking the project’s progression, sharing evolving challenges, and celebrating successes. Team members maintained meeting notes and personal research journals throughout the project. These meeting notes and journals provided a private space for documenting individual reflections and capturing personal experiences, thoughts, and observations that might not have been shared in group settings. All focus groups, research meetings and semi-structured interviews were audio-recorded and transcribed verbatim.

Data analysis

The teams from each country independently worked on their respective case studies, conducting detailed analyses based on the specific contexts and data available. For both studies, we have a total of 26 transcripts: six from focus groups, three from interviews, and 17 from meetings and reflective practice sessions. We conducted a thematic analysis [33] using a mixed inductive and deductive approach [34]. A research assistant of each team conducted the coding of the transcripts, meeting notes, and journal entries, with codes emerging from the data (inductive) and existing literature (deductive). Each team compared the codes and data from transcripts, meeting notes, and journal entries in the categorization process. The categories with different pieces of data were presented to all team members, including patient and meetinfamily partners, industry partners, healthcare providers, researchers, and trainees. They compared the categories with the data and commented on how the categories could be refined. The categories were refined accordingly. Similar categories were grouped to form themes.

The final step involved developing themes that encapsulated the critical insights from the projects. This was achieved through a collaborative process of discussions involving all team members, including patient and family partners, industry partners, healthcare providers, the researcher, and trainees. The researcher presented themes with different pieces of findings to the team members. Each team member commented on the themes, ensuring that the themes represented an agreed understanding of the project’s learnings and refining the wording of the themes if needed.

Throughout the process, the teams engaged in collaborative discussions, systematically comparing their findings across both cases. This comparative approach allowed for cross-country insights, facilitating the identification of common themes, differences, and unique challenges faced in each setting. By contrasting their results, the teams were able to refine their analyses, draw broader conclusions and highlight the implications of their findings for both local and international contexts.

Rigor

We adopted different measures to ensure the trustworthiness and rigour of the analysis. (1) We used different data sources, including focus groups, interviews, meeting notes, and journal entries. (2) We included quotes from data to enhance credibility. (3) We involved team members from different backgrounds in the analysis process through team discussions. We acknowledged that we came from different backgrounds and had assumptions. Through team reflection, we challenged and discussed how each author’s position might shape our perspectives. For example, LH, a female Asian professor in Nursing, is likely to prioritize the voices of community partners due to her experience in patient and public involvement (PPI). This focus on inclusivity may strengthen engagement with marginalized groups but could emphasize community voices over other perspectives. TR, a research academic and allied health clinician, ensures that the project maintains clinical rigor by integrating evidence-based solutions. DD, the CEO of a rural health service, brings valuable insight into addressing local community needs and resource allocation, especially in rural areas. SS, the president of a community dementia advocacy organization, amplifies the voices of marginalized groups and emphasizes inclusivity and community engagement.

Results

The first question in our refection: What – What we have experienced?

Our analysis highlighted four common mechanisms, which are key for fostering an inclusive environment for Equity, Diversity, and Inclusion (EDI) approaches in research:

Four common mechanisms

1. Engage patients and the public early to identify gaps

2. Analyze perspectives and lived experiences of patients and public

3. Co-design research ideas and co-produce solutions

4. Involving patients and the public iteratively throughout the research journey

Engage patients and the public early to identify gaps

Early engagement allows researchers to understand unmet needs and address potential disparities from the outset. It helps identify gaps that may not be apparent to researchers alone, ensuring that research is more relevant and inclusive of all stakeholders’ needs. Patients and the public can play a crucial role in identifying real-world practice gaps that often can be missed, particularly when the research partnership is driven by industry partners (product-focused) or by researchers (academically focused). Genuine engagement and relationship building between researchers and the patients / the public can take significant time and effort but is essential. In the Rural Dementia project, the identification of problems and solutions took over three years across multiple studies. In the TV project, patient and family partners who had established relationships with the Primary Investigator helped to invite additional patient and family partners and mentor the newcomers about the research process. Their early involvement in planning allowed them to influence the decisions of methods that suited their needs and preferences.

Rural health service partner: I remember you came to the [name withheld for confidentiality] and gave a talk [as part of early engagement with community groups] and that was well received.

Analyze perspectives and lived experiences of patients and public

By analyzing the real-world experiences of patients and the public, research is enriched with diverse viewpoints. This ensures that the research does not rely solely on theoretical knowledge but integrates practical, lived insights that are crucial for addressing systemic barriers. A comprehensive needs analysis requires in-depth engagement with patients and the public. In the Rural Dementia project, recruiting study participants was challenging, particularly in small rural communities. Contextual nuances precluded one-size-fits-all solutions to project recruitment. The modified Delphi and semi-structured interviews offered the Rural Dementia project insights into potential gaps and solutions. The TV project benefited from regular in-person lunch meetings, enabling patient and family partners to meet with industry partners and trainees. These informal conversations and interactions facilitated a mutual understanding of each other’s strengths and communication preferences.

TV project family partner: We appreciate all the research team people who are so warm and friendly, and always keeping us updated with who is doing what and so on with a lot of information.

Co-design research ideas and co-produce solutions with patients, public, researchers and industry partners

Co-designing research fosters collaboration between all parties involved. It ensures that solutions are not imposed on participants but developed together, promoting shared ownership, inclusivity, and relevance of the research outcomes. Once research funding was secured based on the initial PPI, the first step was to test the assumptions, ideas, and implementation strategies of potential solutions with all stakeholders. In the Verily Connect project, the research team conducted multiple community forums with all stakeholders on-site and with the technology developer. In the TV project, regular research meetings were established to involve patient and family partners, researchers, trainees and industry partners in planning and problem-solving for all project stages.

Verily Connect project Community organisation representative: You’ve got to listen to people and then engage them in the design of it [the project].

Increase uptake and sustainability by involving patients and the public iteratively throughout the research journey from ideation to dissemination

Iterative involvement ensures that feedback from patients and the public is continuously integrated into the project, making it more responsive to changing needs. This increases the likelihood of uptake and long-term sustainability, as the outcomes are co-created with those who will benefit from them. Close involvement of patients and the public increased uptake of the project and ensured sustainability beyond project funding. The Rural Dementia project, which started as an idea in 2014, continued to evolve. To date, the partnership is growing stronger with new and innovative ideas. The PPI is evident from the generation of ideas and application for joint funding to the implementation of research in rural Australia with industry partners. For the TV project, patient and family partners became the spokespersons; they have taken on the role of advocates, enhancing the project’s visibility and impact.

For the second question in our refection: “so what”, here we describe the five common challenges: (1) experiential bias, (2) underrepresentation, (3) communication gaps, (4) mistrust and (5) power dynamics.

Experiential bias

Experiential bias can significantly impact interdisciplinary collaboration. In the context of the TV study, professional assumptions were evident as team members from diverse backgrounds brought their unique perspectives to the table. These varying viewpoints often stemmed from differences in disciplinary training, professional expertise, and roles within the team. For example, our social worker researcher assumed that other team members would comprehensively understand everyday dementia care, which led to unforeseen challenges. It became evident that both the TV company representatives and academic trainees were unfamiliar with the challenges associated with dementia care in a hospital setting. As a TV industry partner said after understanding how healthcare providers were challenged with physical and emotional demands as well as heavy workload in a fast-paced clinical care unit, “I could not do this job. I have no ideas. It was so hectic!”

Another issue was, in the TV study, the academic supervisor assumed the research purpose and methodology was clear from the outset. However, this assumption proved unfounded. For instance, the purpose of the TV project was to identify barriers and strategies for intervention implemention in clinical care settings, while the industry partners expected the research to demonstrate product effectiveness for commercial promotion.This situation highlights how expertise and familiarity with one’s work can sometimes lead to blindspots regarding the assumptions made about others’ knowledge.

Through team reflection, questions arose that allowed team members to clarify their assumptions and address one another’s queries. This process allowed for a more robust and collaborative approach, as it encouraged open communication, sharing of perspectives, and a deeper understanding of each team member’s background and expertise. Experiential bias can hinder transdisciplinary collaboration by fostering false assumptions and miscommunications. It underscores the importance of regular check-ins, transparent communication, and a culture of inquiry and curiosity within the team to ensure that all members can effectively contribute their unique insights and expertise. By addressing experiential biases and embracing open dialogue, collaboration can become more inclusive, productive, and successful in achieving its research goals.

Underrepresentation

The underrepresentation of older adults in technology research can lead to a lack of diverse perspectives and experiences, potentially resulting in technologies and solutions that do not adequately address the varied needs of older adult populations. In the TV study, our older adults living with dementia voiced their specific needs regarding their cultural preferences. For example, Chinese residents in long-term care homes desired to see actors of the same ethnicity. They also wanted to hear and read their language. To address this challenge, our patient and family partners from various cultural backgrounds ensured their unique insights were integrated into the research process and product development. For example, they were involved in planning video content and film production, letting other team members, including industry partners, academic researchers and trainees, and healthcare providers, learn about their voices so that industry partners could produce videos that addressed their cultural needs. For details on how we made cultural adaptations of videos to meet the cultural needs of older adults living with dementia from diverse cultural backgrounds, please see our publication [25].

In the context of the Rural Dementia Care project, the significant underrepresentation of male volunteers and caregivers, albeit unintentional, emerged as a notable issue due to self-selection bias. This disparity raised pertinent questions concerning the Verily Connect model’s efficacy in catering to this demographic cohort’s needs. By actively promoting inclusivity and diversity, we can be better equipped to develop aging care technologies that genuinely cater to the multifaceted needs in the community of older adults.

Communication gaps

Divergent expectations can be a common hurdle in interdisciplinary projects [35]. By keeping the shared goal in mind and engaging in ongoing discussions, we were able to bridge the gap between varying expectations. Emphasizing a shared objective helped align everyone’s efforts. It is important to note that this process requires active listening and compromise. In our Rural Dementia Care project, team members often had different ideas about the project’s outcomes and how involved each party should be in achieving those outcomes. To resolve these differences, continuous and purposeful dialogue was crucial. In our project, we prioritized community engagement and collaboration with health service partners through regular face-to-face visits or virtual meetings with the project management team.

In the TV study, industry partners hoped specific videos could be tested for residents and patients at specific times. However, healthcare provider team members who implemented the videos did not think this was practical. There was a communication gap: Industry partners did not understand why their suggestion was impossible, while healthcare provider team members did not understand why this could be possible. Through discussions, healthcare provider team members realized that since industry partners did not have a clinical background like them, they did not fully understand the busy workflow of care settings and limited time and human resource capacity. Therefore, healthcare providers explained that they might have other priorities and could only test the videos when time allowed, together with other factors, such as residents and patients being awake. Eventually, through discussion, the team reached a consensus. Healthcare providers were entrusted to use their professional judgment to determine the optimal times for video presentations and report with residents’ and patients’ observations and feedback. This adaptive strategy proved essential in accommodating different care settings’ needs and constraints.

Mistrust

Mistrust posed a significant challenge in our TV study involving older adults, industry partners, and academic researchers. Older adults in our team were cautious about the intentions and potential commercial interests of industry collaborators, while industry partners wanted research outcomes that benefitted product development and their business. Research trainees were uncertain about what to expect, expressing concerns about balancing scientific research rigour with the motives of industry partners.

Similarly, in the Rural Dementia Care project, healthcare service providers voiced apprehensions regarding the long-term sustainability of the Verily Connect model beyond the research project phase, harbouring concerns regarding a general mistrust of academic partners’ intentions. Providers articulated experiences grounded in previous partnerships, where there was a misalignment between the goals of service provision and academic pursuits, expressing valid concerns regarding the integration and normalization of research outputs within service delivery models. Trust and respect formed the bedrock of effective interdisciplinary collaboration. Establishing and nurturing trust-based relationships among team members was paramount. We found that intentional efforts, such as team-building activities and clear communication of expectations, were instrumental in building this trust. Mutual respect was essential in fostering a positive working environment where team members felt valued and heard. When trust and respect were present, it significantly eased the working process, enabling smoother communication and collaboration.

Our TV study revealed that many team members, including industry partners, had limited prior exposure to working in such a collaborative environment. However, as the project unfolded, we observed that ongoing cross-sectoral learning was required. Team members learned from each other, gaining trust and insights into different disciplines and perspectives.

For example, one industry partner later expressed he did not realize how busy a care setting would be until he started working on this project with healthcare provider team members. Listening to their sharing helped him to think more about the importance of simplifying the implementation steps of the videos when designing the technology, such as promoting the use of firesticks and developing an app so that the process of selecting videos could be easier for healthcare providers. This enhanced mutual understanding and contributed to the project’s overall success. Flexibility emerged as a critical trait, as everyone had to adapt to new ways of working and thinking. Embracing change and being open to learning were essential components of this theme.

Power dynamics

Team members highlighted power imbalances between researchers, industry and community older adults as one of the key factors hindering the level and success of engagement. Power dynamics emerge due to differences in expertise, institutional affiliations, and resource allocation [36]. Academic researchers may hold perceived authority, industry partners may bring financial cost, and older adults may have unique experiential knowledge. Addressing power imbalances is crucial to ensure that all stakeholders have an equitable say in research decisions, fostering a collaborative environment where diverse perspectives are valued. In one of the focus group sessions of the TV study, the members underscored the need to take time, trust, and cultivate strong relationships to address power dynamics. Creating a safe and inclusive environment where all stakeholders feel heard and respected is paramount. Building trust among collaborators through transparent communication and ethical conduct is an ongoing effort.

Moreover, strong leadership in facilitation is needed to ensure that power imbalances are recognized and addressed. Leadership can be pivotal in fostering open dialogue, guiding discussions, and promoting a collective decision-making process. For instance, in our TV study, considering that the voices of older adults could easily be missed due to their unfamiliarity with the use of jargon by other team members (industry partners, healthcare providers, academic researchers and trainees) meeting facilitators constantly prioritized the voices of older adults and caregivers by creating time and space for them to speak. It reminded everyone to use accessible language and check in with all members, especially older adults if clarifications of terms were needed. Over time, as relationships strengthen and trust deepens, power dynamics can be more effectively managed, leading to more equitable and productive transdisciplinary research outcomes. By acknowledging and actively working to mitigate power dynamics, transdisciplinary research can harness the collective wisdom of all participants to develop more inclusive and effective aging technologies.

To answer the last reflection question, “Now what”, we identified ten practical strategies for incorporating EDI principles in future transdisciplinary research with academic, industry, and community PPI partners. (1) recruit for diverse representation, (2) establish transparent agreements, (3) incorporate inclusive language and cultural sensitivity, (4) apply flexibility to learn and adapt, (5) embed team reflection (6) take time to build trust and relationships, (7) facilitate meaningful engagement, (8) ensure equitable recognition (9) foster a respectful environment for shared learning, and (10) cultivate a long-term sustained relationship. Please see Table 1, which summarizes the ten interlinked strategies.

Table 1.

Ten practical strategies based on empirical and literature evidence

Practical strategies	Empirical and literature evidence
Seek diverse representation	Strategic recruitment and team composition: Include older adults and family partners from diverse, underrepresented groups based on culture, race, age, gender, language, geographical location, abilities, and digital literacy. Diverse representation in research ensures that the findings apply to all patients; different ethnicities, ages, and genders may respond differently to an intervention. [20]
Establish transparent agreements	Openly share needs, clarify assumptions, and discuss shared goals and commitments. Make clear communication and conflict management as key researchers’ competencies. [21]
Adopt inclusive language and cultural sensitivity	Use accessible language and avoid jargon. Consider cultural and language needs of older adults from diverse backgrounds [22]
Apply flexibility to learn and adapt	Apply flexibility by listening and adapting to the local needs of the care settings, honouring the participants’ voices and advocating for change. [23]
Embed team reflection with industry and community partners	Embed team reflection with industry and community partners fosters collaboration, integrates diverse perspectives, and enhances problem-solving. It ensures alignment with community needs, builds trust, and strengthens partnerships for project success. [24]
Take time to build trust and relationships	Take time to build trust and relationships fosters mutual respect and collaboration. In research, trust ensures that all parties feel valued, encourages honest feedback, and strengthens partnerships.[25]
Facilitate meaningful engagement	Support members in pursuing activities that were personally rewarding. For example, older adults enjoyed interacting with young research trainees, finding it fun and fulfilling to contribute to the trainees’ development.
Provide equitable recognition and opportunity	Prioritize the voices of older adults and family members, valuing their lived experiences as valid and important knowledge.
Foster a respectful environment for knowledge transfer	Create a respectful environment involves ongoing attention to ethics, especially by regularly seeking consent from older adults with dementia, as they may forget details.
Cultivate long-term sustained relationships	Before the TV project ending, we began discussions to continue collaborations on future projects. Our next project, using virtual reality in dementia care, will incorporate lessons from the TV project. The Verily Connect team also worked with service providers to expand the Verily Connect model, with one community adopting it as a service. Academic partners remain committed to future research based on the trial’s outcomes.

Discussion and implications

The demographic shift toward growth in the aging population underscores the escalating need for research and development in technology to cater to the aging population, particularly in healthcare and support services​ [37]. Collaboration among academics, industry, and long-term care home older adults is paramount to developing aging care technology, leveraging the strengths of each sector to address complex challenges associated with aging and technology use. It ensures the development of aging care technologies that are not only grounded in scientific research and commercially viable but also profoundly resonant with the needs and desires of aging populations. In this paper, in our Canadian and Australian studies on projects, we have reflected upon the complex collaborations among academics, industry, and long-term care home older adults regarding aging research and technology development.

As suggested by Ocloo et al. [38], there are systemic barriers to public involvement in research. For example, cultural and language barriers, insufficient resources and accomodations may require initiatives at the organisational level. Power dynamics and complexities in realizing EDI are under reported. Similarly, we found systemic challenges in achieving EDI in research, particularly when it comes to meaningfully and respectfully involving underrepresented groups, such as older living with dementia and those in rural regions. Our aim in this paper was to contribute to this conversation by reflecting on the barriers encountered in engaging underrepresented groups and detailing the mechanisms, challenges and practical steps taken to overcome these challenges. By sharing these experiences, this paper provides useful insoghts informed by real-world lessons learnt for researchers and highlights the importance of addressing both the how and why of meaningful engagement.

While funding agencies increasingly emphasize the importance of patient and public engagement, there remains a significant gap in guidance on how to effectively implement these practices and the underlying reasons for their importance. Few researchers report on the specific challenges they face or share strategies for overcoming these obstacles, leaving others without clear examples or practical tips. In our studies, we worked with diverse groups of older adults. It is important to recognize the heterogeneity of older adults who experience diverse and evolving needs. Involving older adults and relevant partners ensures that the technologies developed are aligned with their actual needs and preferences, which can significantly improve the relevance and usability of the products [39]. The blending of academic research with industry pragmatism, combined with the lived experiences of older adults in the community and long-term care homes, creates opportunities for innovative solutions that may not emerge within a single sector [1]. Our results are in line with a recent study by Bevan et al. [40], which also found building trust was a key step to meaningful engagement of under-served groups. Both of our Canadian and Australian projects indicated invaluable knowledge exchanges and lessons learnt from each other in our multi-sectoral collaborations.

Engaging a diverse group of stakeholders in the development process encourages the consideration of ethical issues, such as cultural sensitivity and the needs of older adults with dementia and disabilities. The results of our work promoted the design of inclusive technologies that cater to a broader range of abilities and racial backgrounds. Participation in the development process empowers older adults, giving them a voice in co-creating technologies that affect their lives, which can lead to greater community engagement. Engaging these industries, patient and family partners ensured that our research addressed real-world challenges, needs, and preferences. This approach enhanced our findings’ credibility and underscored the importance of patient and family-centred care in dementia settings. It reinforced the idea that technology solutions should be designed with the end-users in mind, considering their unique experiences, preferences, and challenges. Furthermore, involving patient and family partners fostered a sense of empowerment and ownership among them. They actively shaped the research, contributing to developing more patient-centred and holistic approaches to dementia care. This collaborative relationship also strengthened the bonds between healthcare professionals and those they serve, promoting a sense of shared responsibility in improving practice.

Literature offers key insights into EDI and PPI in health research. In their article, Lignou et al. [22], critique the lack of clarity in implementing EDI in PPI, focusing on equality of opportunity. The paper emphasizes the need for clearer ethical guidance to overcome barriers that exclude under-represented groups, warning that without addressing these, research risks perpetuating inequality. Bevan et al. [40] describe “The Listening Series,” which identified five key strategies for improving EDI in PPI: building trust, early involvement, demonstrating impact, clear communication, and understanding participants’ needs. This paper highlights ongoing challenges in engaging marginalized groups meaningfully. Our work in dementia research resonates with these observations, where building trust, family involvement, and a diverse range of stakeholders and sustained engagement are highlighted as essential. These elements continue to be areas of deficiency when it comes to research vis-à-vis underrepresentation or inclusivity. EDI is not just procedural but requires active management of barriers and power dynamics to ensure meaningful participation. Researchers should be encouraged to document and openly share the specific challenges they face in engaging underrepresented groups, along with strategies they used to overcome these barriers. Future research should focus on creating evidence-based frameworks that provide practical guidance on how to involve underrepresented groups meaningfully. These frameworks should be adaptable across various research contexts and clearly explain why inclusive engagement is necessary.

It is important to note that Canadian and Australian case studies demonstrated opportunities for educating and training students and professionals across disciplines, fostering a workforce skilled in creating and implementing aging care technologies. Such collaborations can spur the growth of interdisciplinary research fields, blending areas such as gerontology, computer science, engineering, and health sciences, which are essential for advancing aging care technology. Collaborating with industry partners brought a practical dimension to our research. These partners often possess the technical expertise and resources to develop and implement technology solutions. By involving them, we ensured that our research was not confined to theoretical concepts but had a tangible path towards implementation. Industry partners could provide insights into the feasibility, scalability, and market readiness of technology solutions emerging from our research.

Our lessons highlighted the importance of bridging the gap between academia and industry in healthcare innovation co-created with patient and family partners and healthcare providers. It emphasized that research should not exist in isolation but should be directly connected to the industry’s capacity to translate findings into practical solutions. This alignment is essential for ensuring cutting-edge technologies find their way into healthcare settings to benefit patients and healthcare providers. Early engagement with patient and family partners and industry partners enriched our research and highlighted the imperative for healthcare providers to engage with technology in their practice actively. We believe this inclusive and collaborative approach helps to co-create more effective and patient-centred solutions for senior care, promoting the accessibility of technology to benefit all for equity.

Limitation.

A limitation of the case study analysis of the two projects in Canada and Australia is that the differing sociocultural and healthcare contexts make it challenging to compare findings across both settings. The unique healthcare systems, community dynamics, and resources available in each country create distinct environments for dementia research. This variability underscores the importance of contextualizing EDI strategies to the specific needs of the population and setting. We acknowledge that while the study finds challenges and strategies for incorporating EDI in research, it may not fully deal with the underlying systemic issues that contribute to these challenges. Furture research should invest more efforts in a deeper examination of the root causes of implicit bias, underrepresentation, and power dynamics might provide more comprehensive solutions.

Conclusion

In conclusion, applying Equity, Diversity, and Inclusion (EDI) approaches in collaborative endeavours on Gerontechnology research is paramount for fostering meaningful and impactful partnerships. Equity ensures that everyone has the support they need to participate, diversity recognizes the value of different perspectives, and inclusion ensures that all participants feel valued and engaged. To effectively integrate EDI in research, we propose ten practical tips to serve as actionable strategies. (1) “Seek diverse representation” ensures that underrepresented groups have a voice, while (2) establish transparent agreements sets the stage for open communication. (3) Adopt inclusive language and cultural sensitivity makes research accessible to all participants, and (4) apply flexibility allows the team to adapt as needed. (5) Building trust and relationships takes time but is essential for sustained collaboration, while (6) meaningful engagement allows participants to co-create solutions. It is also critical to (7) provide equitable recognition and ensure all members have opportunities for contribution, (8) fostering an environment of respect. (9) Team reflection with industry and community partners helps embed EDI into the fabric of the project, and (10) sustained long-term relationships build continuity and trust over time.

Author contributions

LH, KLYW, and IB conceived the idea and developed the structure of the manuscript. LH was the major contributor, and KLYW, LHR, IB, DD, SS, TR, and AB also contributed to its writing. AB represented a family partner and has been involved in the Canadian case study. SS represented a consumer group and DD represented an industry partner; both have been involved in the Australian case study. All authors read and approved the final manuscript.

Funding

The Canadian project was supported by the Accelerate Fund under Mitacs [number IT27862].

The Australian projects were funded by La Trobe University Research Focus Area, ‘Building Healthy Communities’, participating SMART partners and the Australian Government, Department of Health, Dementia and Aged Care Services (DACS), opportunity 1: support for existing and emerging challenges in dementia, grant number 4-4Z3E23H.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

The Canadian case study has been approved by the University of British Columbia Ethics Board (committee reference number: H22-02089.)

The Australian case study was derived from the following studies with ethics approval: La Trobe University Human Research Ethics Committee and the participating health service reference HREC No. 15/069 and the Melbourne Health Human Research Ethics Committee (HREC/17/MH/404, reference 2017.376).

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.