Engaging Patients and Citizens in Digital Health Technology Development Through the Virtual Space
Digital technologies are reshaping healthcare, empowering individuals to manage their well-being. However, disparities in access to these technologies, influenced by demographics, economics, and culture, exclude segments of the population. While digital health offers new avenues for enhanced care and services, it also presents risks for vulnerable users. Limited digital literacy, lack of interest, and low self-efficacy in technology use contribute to growing digital health inequalities. In response to the COVID-19 pandemic and its aftermath, the transition to digital health is crucial. To promote responsible innovation and the effective use of digital health by all, particularly vulnerable populations, patient and citizen participation must be a fundamental aspect of research. This article proposes a model where patient partners establish research priorities using their experiential knowledge, and benefit from increased self-efficacy and literacy through involvement in research. We present an operational example: a Virtual Community of Patients and Citizens Partners (COMVIP), a digital tool co-created with patient and public experts. Built on principles of equity, diversity, and inclusion, COMVIP will gather individuals from diverse backgrounds and literacy levels in vulnerable situations to gather knowledge, share experiences and actively contribute to the co-development of innovative strategies and health technology assessment.
The Growing Role of Digital Tools in Healthcare
Over the last two decades, digital tools have rapidly evolved, finding increased applications in healthcare. These tools are linked to improvements in well-being and health, facilitating collaboration between clinicians and patients, leading to higher patient interaction and participation in care. The active engagement of patients has been additionally shown to improve clinical outcomes and the quality of health services.
Digital tools have the potential to adapt readily to various situations because of their versatility. However, social inequalities lead to disparities in access to healthcare and digital technologies. Vulnerable populations often lack access to telecommunications services, which limits their access to gainful employment, education, and social services. They tend to experience chronic diseases, social isolation, lower socioeconomic status, lower levels of education, and harmful health behaviors, like smoking. While digital technologies help break the isolation of older individuals living alone, access and familiarity with these tools presents a barrier to its use for those populations. Bias in digital health data caused by underrepresentation of cultural minorities, including Indigenous populations, can be a barrier to these groups. Difficulties in searching for and comprehending health information and services using digital tools also exist. Digital health innovation use has increased due to the COVID-19 pandemic. However, specific populations in vulnerable situations continue to have only limited access to and use of these solutions. These digital health inequities can result from characteristics like demographic, economic, and sociocultural factors; alongside limited computer literacy, disinterest, and low levels of technology self-efficacy as barriers to digital health tools. Digital health technology solutions are often designed without insight or experience of the vulnerable groups, which makes them inadequate to meet their needs. Underrepresented groups in digital health solutions typically include older adults, people with disabilities, at-risk youth, cultural minorities, as well as Indigenous populations.
The COMVIP project Co-creation process.
Underrepresented groups do not fully benefit from the opportunities offered by digital technologies to access health services. Meaningful patient and citizen engagement is critical for the successful application and implementation of research results. To achieve strong patient and public engagement, creating an inclusive environment where the shared expertise of those involved in the research process is valued is crucial. For the development of adaptable digital technology for patients, patient and public partners can undertake essential roles in research by supporting access to peer networks and difficult-to-reach groups, and peer-to-peer recruitment. Engaging users as active co-creators of technology is critical to increase the adoption of digital tools. Meaningful engagement improves the understanding of the needs, preferences, experiences, and potential limitations of digital tools. A digital technology must have the potential to attract, adapt, and immerse the user in the content to be useful and effective. Studies, however, reveal that the effectiveness of technology interventions can be limited by inappropriate use by the intended users, leading to the abandonment or rejection of the tool over time. User engagement is a multidimensional structure, encompassing cognitive, behavioral, and affective components that allow the user to effectively adopt a digital tool.
The design process for COMVIP incorporated patient and user perspectives from the research process’s conceptualization through platform testing and development to ensure the highest retention, adaptability, and satisfaction. The digital tool created will enable ongoing design development and feature adjustments according to user experience and patient and public preferences by monitoring the usage activities of the patients and the public on the platform and openly addressing barriers and needs. COMVIP can be further adapted to its users, thereby allowing for sustainability and continuity of research projects and digital technology development, which in turn serves as engagement quality indicators. As a result, COMVIP seeks to adjust to the needs of its intended users by presenting an adaptable, customizable, informative, and inclusive navigation environment.
COMVIP: A Virtual Community
To further efforts for patient and public participation in health technology assessment and the development of digital technologies in research, the idea of a virtual platform to share experiences and knowledge was born. This feasibility project aims to implement and assess COMVIP, an original intervention created by patient and citizen partners, community organizations, and researchers. It is based on deliberative approaches and principles of equity, inclusion, support, diversity, mutual respect, and co-building. A collaboration with patients and citizens was established for the co-creation process outlined in this paper. The team can rely on the active engagement of patients and citizens, who are considered research team members and collaborate in every stage of the research project. Their active engagement will offer assistance via their shared care experiences and technology usage. Patients and citizens are considered experts in various research activities and methods and will participate in the writing of the research protocols, the planning of research methods, and the implementation and dissemination of research results.
The goal of this project was to: (1) encourage meaningful engagement of patients and citizens in the development of digital technologies in health; (2) improve digital health literacy and confidence in the use of health technologies; and (3) recognize obstacles to the effective use of digital health tools. By involving users in tools development, the project will contribute to the digital transformation of health and health technology assessment. It will advertise strategies for including underrepresented groups in digital health projects in Canada and across the world, and it will direct practice implementation to promote user empowerment. Digital technologies can be seen as a tool for quicker access to care and services, as well as better use of resources. The inclusion of end users in the design of digital health projects encourages the adoption of digital tools, and it’s a well-known strategy for a responsible innovation process. Patients and citizen partners will be asked to define their requirements and define their priorities in the use of digital solutions, which will be jointly developed and tested in subsequent research projects.
Patients and citizen partners have diverse backgrounds (immigrants, people with specific health conditions, community organizations, Indigenous peoples) and are committed to the development of COMVIP. For them, this platform is a tool for making their voices heard and influencing the healthcare system’s digital transformation. COMVIP responds to a desire for access to the real-world knowledge of people who could benefit from digital tools in health, but who are often difficult to reach for the team members who originate from the domains of academic research and the development of digital solutions. The project inspired the creation of an original, iterative methodology appropriate for the current conditions linked with COVID-19, which limited physical interactions. This co-construction model enabled team members to cooperate effectively and begin the COMVIP platform design process in a virtual setting.
Co-creation Process
The research team included university professors, health professionals, experts in the fields of medicine, nursing, public health, social sciences, education, ethics, marketing, mathematics, computer science, and AI from various Quebec institutions. The research team also has the engaged participation of patient experts and collaborators from community organizations such as the Centre d’amitié autochtone du Québec, the Association des étudiantes et étudiants de l’Université du 3e âge de Québec (AEUTAQ), the Regroupement des organismes de personnes handicapées de la région de la Capitale-National RPO3) and the Service de Référence en Périnatalité pour les Femmes Immigrantes de Québec. To work remotely on the same documents and share project progress in real time with all parties involved, we chose a collaborative application.
A first meeting took place in February 2021 to officially launch the COMVIP project. The senior researcher had previously made sure that all team members could attend the meeting. Since sanitary measures were implemented in March 2020, attendees were comfortable with virtual gatherings. As previously stated, virtual meetings have various benefits as a work tool.
An inclusive approach to co-creation and co-production enhances public and patient engagement in projects in line with their priorities and interests, and facilitates the implementation process. To ensure and stimulate everyone’s participation and collaboration in the discussion, the research team put a lot of work into it, and made themselves available to solve any technical difficulties before officially starting the gatherings. Stakeholders are advised to go through an iterative process in the co-creation process. The research project thus adhered to a co-creation cycle made up of four steps: exploring solutions and avenues; making decisions about which ideas to keep; creating a prototype and evaluating the prototype. Participants came mostly from Quebec City and Montreal and were involved in the conception of COMVIP from the start. During the first meeting, which took place on February 8, 2021, the research team discussed about the objectives of the research project and the platform’s intent, so that all involved agreed upon the aims and develop a shared purpose which is a key patient engagement quality criterion. Then, team members could comment, discuss limits and barriers from their perspective and propose opportunities and ideas to the research team. All team subgroups were present and represented by at least one member during the gathering (patient and citizen partners, community organization representatives, researchers working on patient-centered care projects and team members leading the project) to reach stakeholders’ representativeness. The first meeting allowed to explore the feasibility of the COMVIP platform with intended users and stakeholders.
During the second team meeting in April 2021, participants identified content and functionalities to be added to the prototype according to users’ needs. The research team developed a platform prototype with the help of a graphic designer and web developer from April 2021 to May 2022. The creation of the prototype was inspired by Ruel and Allaire’s manual on accessible information and the WCAG international standard for people with disabilities from the W3C Web Accessibility Initiative. A single-paged and simple-to-use platform prototype was the result of the co-creation process. It provides simplified menus for quick and easy access to particular content (e.g.,: courses, profile, forums), font size modification icons for better reading experience, vivid colors adapted to the visually impaired and color-blind, inclusive images representing the variety of peoples and cultures that make up the population, easy access to projects’ description and a space presenting the name, photo and contact information of the different members of the COMVIP team.
During a third team meeting on May 12, 2022, the COMVIP prototype was introduced to stakeholders. Researchers in charge encouraged everyone to offer their thoughts and make any necessary modifications. The prototype was well-received by researchers, patient and citizen partners. Feedback such as the inclusion of an introductory user descriptive video clip, standardized project profile resumes and the addition of useful project links was gathered for a better user experience.
All the different opinions and propositions will be reviewed according to two criteria: significance and feasibility. The feedback obtained from the meeting helped understand the usability of the platform and the need for minor corrections and additions. A fourth meeting will be organized in order to present the final version of the COMVIP platform and present the changes made to team members in order to evaluate their satisfaction. By the end of the project, the group should have come through three steps of the cycle of co-creation: feasibility, usability and satisfaction of stakeholders.
A portrait of Canadian underrepresented groups living in vulnerable situations.
Conclusion
Through virtual workshops and showcases, people from varied backgrounds can take part in the co-development of digital health solutions customized to their needs. COMVIP effectively empowers and includes stakeholders through every research and development stage. The involvement of the participants towards COMVIP will be key to its successful adoption, implementation and sustained use by stakeholders and public.
