Co-designing Diabetes Care With Patients

Abstract

More than 537 million adults worldwide are living with diabetes and navigating its health and lifestyle impact. People living with diabetes face unique challenges in managing their diet and exercise, monitoring their blood glucose, self-administering medications, and effectively integrating their disease into their social activities. In addition to diabetes being a challenging multifactorial disease, these challenges arise in part from patients having to navigate a complex ecosystem where sectors are siloed and its services, products, and environments are not designed with the patient in mind. To address these challenges, the ecosystem of diabetes care, including researchers, healthcare professionals, product and service developers, and policymakers, can adopt co-design methodologies providing patients and caregivers a seat at the table when creating solutions. Co-design in healthcare is an approach to problem-solving where patients are viewed as equal partners providing their own unique perspective and expertise, to design and develop devices, services, and environments. Co-design emphasizes the value of the user’s insights and expertise. Incorporating patient perspective has been shown to increase patient empowerment and satisfaction, enhance healthcare technology value, and strengthen the collaboration between the patient and their interprofessional ecosystem. We describe opportunity spaces, successful examples, and strategies to better engage patients in research, policymaking, and healthcare product, service, and environment development through co-design methods. By incorporating co-design, the ecosystem of diabetes care can deliver more effective, high-quality patient-centered care, products, and services.

Introduction

The Role of Co-design in Health Care

Evolving from participatory design techniques, co-design is a team-based approach to solving problems and developing solutions that involve active collaboration and participation of various stakeholders, designers, engineers, experts, and end users (e.g., patients), in the design and development process. Stakeholders, including both traditional experts and experts in experience (i.e., patients and caregivers), work as equal partners, sharing their insights and perspectives, with the goal of creating a solution that better addresses the needs and concerns of patients more effectively. As stated in the book, Bringing user experience to healthcare improvement: the concepts, methods and practices of experience-based design, “‘co’ in co-design is a significant and powerful prefix, suggesting more of a partnership and shared leadership.” ¹ When used consistently, co-design can help clinicians and patients overcome challenges around communication and decision-making. Placing patients at the center of the decision-making and design process creates a collaborative and supportive environment that empowers patients to take an active role in their healthcare journey.

Co-design has been applied successfully in various domains both inside and outside of healthcare, and groups who utilize this principle consistently have created some of the most user-friendly products and experiences we interact with today. In the ecosystem of diabetes research, product, and service development, it is critical to empower the end users of these services, frequently patients and caregivers, to have a seat at the table. Co-design in diabetes can go beyond shared decision-making and it is the responsibility of individuals with the agency to advocate that patients and caregivers are involved in any effort to develop more patient-centered services, devices, and environments.

Health-promoting organizations have adopted these principles into many of their recommendations, even when not explicitly labeled as co-design. In 2020, the World Health Organization (WHO) formed a Technical Advisory Group for the Behavioral Insights (TAG-BI) and Sciences for Better Health initiative. The group released a technical note outlining six principles for adopting a behavioral science perspective. Principle 6 stated that participatory approaches and co-design should be used in the planning, designing and implementation of research, advocacy efforts, capacity development, and health policies and programs. ² In December 2022, a member of the TAG-BI presented on the importance of integrating behavioral science into diabetes care to the WHO Technical Advisory Group on Diabetes and work is ongoing to respond to these recommendations in the field of diabetes. ³ Here, we present examples of the use of co-design in healthcare and diabetes with the goal of supporting its implementation more broadly.

Co-design in the Ecosystem of Diabetes Care

The 2017 National Standards for Diabetes Self-Management Education and Support stated that there is substantiated evidence advocating for an interprofessional team approach in diabetes care, education, and support. ⁴ Patients with diabetes and caregivers carry the highest burden to navigate this complex disease and actualize diabetes management in their own lives and therefore should be included as a member of the interprofessional team as they are experts in their own care. Patients face several challenges in their diabetes care, including maintaining lifestyle modifications, medication management, blood glucose monitoring, and its emotional impact. Managing the ecosystem of diabetes is another burden, hence the importance of being included in its development. While frameworks for co-creating optimal care plans exist in the shared decision-making model, other valuable collaborative tools exist and have been used effectively in healthcare. Clinicians face a unique set of challenges as well as they are both a designer and user within this system. Being educated and utilizing co-design methods can help clinicians to address some of these challenges more successfully.

Another essential group in the ecosystem of diabetes care are those that are responsible for developing technologies, establishing and maintaining health systems, and conducting research related to diabetes management and support of people with diabetes. It is imperative that products and services are designed with a user-centered framework to ensure they meet the needs of end users in this complex system of disease management that is already crowded with innumerable tools and devices with varying levels of efficacy. Clinicians, patients, and caregivers should be empowered by those with agency in this space to demand better representation in the development of these programs and products.

Establishing and promoting a framework for user-centered collaboration is essential for clinicians, patients, and other stakeholders to ensure the best outcomes possible. The principles of co-design have been used in healthcare to center decision-making around the end user; however, there is a clear value to ensure its use specifically in the diabetes ecosystem and we aim to surface examples and provide recommendations so that others may incorporate co-design into diabetes care.

Opportunities for Co-design in Diabetes Care

A literature review was completed to identify examples of co-design in health care and the diabetes ecosystem. From this research, we categorized a selection into overarching opportunity spaces to provide examples of co-design being used in practice.

Designing applications

Mobile applications and devices have successfully integrated co-design into product development. ⁵ For example, one group aimed to address the deficiencies between theoretical guidelines and the realistic practice of mood monitoring for young people via a mobile application. Normally, feelings and mood tracking are very difficult topics to discuss; however, co-design methodologies assist in lessening these barriers leading to valuable insights. This group used a co-design design studio methodology where they gathered a user group and asked them to design features of an app that encourages mood self-monitoring, self-management, and clinician communication. Individuals were engaged first individually and then as a group. ⁵ From this work, they found that young people prioritized the customizability of their app’s color system, the ability to document events that could potentially influence their mood and an immersive experience to allow the user to have real-time distractions. ⁵ The co-design process resulted in a deeper understanding of the patient’s needs which helped the group to design an application with the potential to improve adolescents’ communication of their mood symptoms and self-monitoring with their clinicians, thus improving access to timely interventions. ⁵ Co-design interventions for mobile applications offer benefits such as improved usability, enhanced user experience, personalized features, and increased satisfaction among individuals. ⁵ Developing an application can be expensive due to costs for developers, updates, and unforeseen components, so there are steps taken before development to validate the user’s needs through user feedback on low-cost prototypes (eg, storyboards or wireframes). Mobile applications are just one example of the types of digital health products in which the utilization of co-design is beneficial.

Designing devices

Co-design has been shown to drive innovation and improve healthcare delivery. ⁶ Device design and development has been moving toward including patients and caregivers. For example, IDEO CoLab is an innovation engine where patients, caregivers, and healthcare providers, designers, academics, professionals, and communities explore systemic challenges, design, and prototype novel interventions, tools, and services. ⁷ In 2017, IDEO CoLab and Ascensia Diabetes Care partnered to tackle the design challenge of creating a comprehensive diabetes management system for the digital age. ⁸ Through a comprehensive analysis of patient needs via patient interactions and the blood glucose monitoring experience via empathy building activities, ⁹ the team discovered two significant issues: access to reliable information ⁹ and the stigma of checking blood sugar levels in public. ⁸ From their co-design efforts, they created the Contour Next One blood glucose meter and Contour Diabetes applications for patients to seamlessly integrate into their personal technologies and interpret their results visually. ⁸ The system allows patients to take their blood sugar easily with the Contour Next One device, upload the result into the Contour Diabetes phone application, and instantly gives the patient a red, green, or yellow reading for below, within, and above the target range, respectively. The device and application were launched in 23 languages across 44 countries and met ISO 15197 accuracy criteria. ¹⁰ In a study, the Contour Next One and the app assisted patients in diabetes management by helping them understand their lifestyle modifications’ effect on blood glucose (99.7%), low blood glucose prevention (99.7%), and diabetes control through self-monitoring (99.4%). ¹⁰ Glucometers are just one example of the types of devices where co-design is crucial.

Designing care environments

Co-design also contributes to the development of more welcoming and supportive healthcare spaces. For example, a group in London used a Experience-based Co-design (EBCD) process to empower former patients, families, and staff of their stroke units to redesign the unit environment to better encourage the therapeutic activity of current patients. EBCD was used because a patient’s level of involvement in their rehabilitation is dependent on the patient’s motivation and therefore patients were involved in the space’s redesign to ensure it met user needs and encouraged the intended activities. From processes that prioritize patient needs, small but meaningful insights were identified such as frames for photos that led to increased effective patient interactions. Patients also wanted socializing activities like cognitive games and meet-ups in communal spaces. The changes implemented from the EBCD sessions enabled inpatients to build familiarity with their environment, thus promoting motivation and hope in their health journey. Staff described that both patient rooms and common areas felt more comfortable and secure, which led patients who were previously noninteractive to become more engaged with their changed environment. By involving patients in the design of improved built environments, such as healthcare facilities, community programs, and workplaces, barriers are addressed and spaces are created that promote happiness, and healthy behaviors, enhance social support, and facilitate self-care. Rehabilitation spaces are just one example of the healthcare environments where co-design is important. ¹¹

Designing services

Extending the use of co-design beyond disease management into prevention strategies is a viable solution to address the growing population of people with diabetes. For example, Pediatric and Adolescent Comparative Effectiveness Research (PACER) at Indiana University School of Medicine explored co-designing a more effective diabetes prevention program for teens with type 2 diabetes mellitus (T2DM). ¹² Obesity in adolescents is a problem and although adult diabetes prevention programs have improved over time, there is limited research on whether these programs help adolescents. Using human-centered design methodologies, PACER hosted four sessions (one professional, two parent and adolescent, and one adolescent only session) to gather the needs, wants, and values of stakeholders. Each session included drawing, barrier mapping, or discussion activities where participants reflected on environmental barriers to lifestyle changes, ideal characteristics for a prevention program, and engagement strategies for a prevention program. ¹² After collaborative analysis of the activities, the team identified important patient and caregiver barriers (i.e., limited availability and cost of health options, competing priorities like school and work, and access to transportation and safe places for physical activity), program characteristics (i.e., no lectures, a play and fun focus, rewarding success, trying new foods, and building relationships with fellow program participants), and engagement strategies (i.e., using inviting language and the right messaging such as naming the program “FIT: Fight It Together”) for an adolescent prevention program. ¹² Simulation models have determined that designing and developing tailored diabetes prevention programs could lead to significant long-term savings for the healthcare system via decreased treatment costs. ¹³ Because diabetes mellitus (DM) is a multifactorial disease, it has environmental, behavioral, and socioeconomic risk factors. ¹⁴ Gathering patients’ needs and values through co-design sessions would allow for more personalized, effective interventions, experiences, devices, and environments leading to long-term healthier behaviors, and lifestyle modifications which could prevent the onset of diabetes and decrease treatment costs.

Quality improvement

Inherent to the design process is the concept of iterative improvement which is best achieved with input and feedback of stakeholders. Therefore, co-design is an essential component of effective continuous quality improvement strategies. The involvement of patients and caregivers in the post-development process leads to more meaningful feedback and sustainable improvements in the projects’ outcome, increasing the longevity of the device or service. ¹⁵ For example, the MyWay digital health ¹⁶ platform, which evolved from the My Diabetes My Way (MDMW) project, is a collaborative initiative that involves patients living with diabetes, clinicians, and researchers in the co-design of a cost-effective Web-based platform for diabetes self-management in Scotland. ¹⁷ From their co-design efforts, a Web-based platform was created that provides patients with diabetes with personalized information, resources, access to their clinical data including test results, and tools to empower them to better manage their condition long term. ¹⁶ Following its launch in 2008, the platform granted access to all people living with diabetes in Scotland. Continued iteration of the platform was conducted via gathering and analyzing patient feedback. In a small population, MDMW was associated with user-improved blood glucose control and clinical outcomes. ¹⁵ However, improvements could be done to reach a larger population. In 2018, patient feedback was gathered on system utility, the best and worst parts of the system, and potential new features. Patients expressed appreciation for the diverse data visualization tools that helped them in interpreting their personal data. However, they encountered challenges related to data, including issues with accuracy, missing data, and difficulties inputting information into the system. A potential new feature that respondents suggested was adapting the platform into a mobile application and introducing gamification into the platform. ¹⁵ Co-design principles encourage establishing communication links that promote a continuous feedback loop between patients (users) and the leaders of a product or system (designers), thereby making an already existing solution more user-friendly, effective, and relevant over time.

Health disparities and equity

Co-design can help to address health disparities and promote health equity. Co-design emphasizes that patients are the “experts of their experiences” and these perspectives are needed to develop the most effective device or service for that population. ¹⁸ For example, a group in Australia looked for optimal approaches to co-design with First Nations Australians to begin to address the health disparities among the population. They found that First Nations Australians respond better when their community has control via a bottom-up method and prioritized a culturally grounded approach. ¹⁴ This fundamental understanding of how to engage with this population was a critical learning and allowed for this group to co-create more effective health programs in direct collaboration with First Nations populations in hopes of reducing health disparities. ¹⁴ Co-designing diabetes care to emphasize inclusion and equity would ensure that those in marginalized and vulnerable populations are not just understood, but actively involved in the design of interventions relevant to them. ¹⁸

Educating clinicians in design

By teaching current and future clinicians the importance of co-design and practicing design principles, they will be better prepared to use it in their practice and demand its use from others in their ecosystem. Many healthcare professional education standards incorporate measures for collaboration and empathy; however, educators do not have standard methods for teaching these concepts. Because co-design emphasizes patient-centeredness, multidisciplinary collaboration, and creativity, it fits well into standard pedagogical frameworks around empathic and collaborative care. Like pharmacology, pathophysiology, and anatomy, co-design is a methodology that requires didactic and practice for a person to master over time. The integration of co-design in healthcare has been deployed successfully in various healthcare systems and programs such as Sidney Kimmel Medical College’s Scholarly Inquiry Design program at Thomas Jefferson University, Stanford Medicine X, and the Design Institute for Health at the University of Texas-Austin’s Dell Medical School.

Leveraging co-design in organizations

As there is a recognized value in fostering co-design between healthcare professionals, researchers, designers, engineers, and patients, especially for a complex disease such as diabetes, numerous organizations encourage the use of co-design by building these principles into all programmatic and funding opportunities. The Patient-Centered Outcome Research Institute is a US nonprofit research organization that funds patient-centered comparative clinical effectiveness research and also supports patient-led science and patient scientists. ¹⁹ An international collaboration, the OPEN Project, focuses on involving individuals with diabetes in the co-design of personalized, data-driven diabetes care empowered by open-source devices. ²⁰ The Co-Create Project, which is a partnership between the World Cancer Research Fund International and 13 other research and advocacy organizations, exists to co-design and implement evidence-based policies to prevent obesity and associated comorbidities including diabetes. ²¹ Professional organizations are powerful leaders of change and those who embrace co-design have the potential to lead the way in encouraging more patient-centered solutions in diabetes care.

Incorporating Co-design Into Diabetes Care and Addressing Barriers

Patients’ and caregivers’ perspectives are crucial in the ecosystem of diabetes care, research, product, and service development. There are many ways to incorporate co-design and patient perspectives in current and ongoing diabetes care and research. Barriers to doing this successfully are notwithstanding. Co-design processes may increase the time and effort required to go from problem to solution, although many may argue that time is ultimately saved in the end by ensuring the solution developed meets the actual needs and desires of users. Compensation of time for participants is another challenge. Mechanisms for compensating non-traditional team members may not be well defined or even allowed in many healthcare environments. However, it is important to value a patient or family member’s time just as one would a traditional expert. Another barrier worth mentioning is familiarity and comfort with co-design principles. While there are many educational resources available, ultimately co-design is best learned through practice and the initial step may feel daunting for all parties involved. Despite these and other barriers, co-design has been shown to be a valuable tool in improving care and the following recommendations will help anyone who aims to utilize these principles in their work or practice.

Build diverse collaborative teams

Representing diverse stakeholders, including patients and caregivers, improves the insightfulness, effectiveness, generalizability, and validity of outcomes.^6,14 It is important to assemble teams with diverse user characteristics, including cultural factors, social barriers, age, and socioeconomic status. Education should be provided to teams about the importance of representing unique perspectives to facilitate a better understanding of the needs of diverse users.

Create collaborative spaces

Creating a supportive environment for co-design requires an emphasis on inclusivity and accessibility, especially with regard to health literacy and technology proficiency. These can be addressed with an organizational commitment to collaboration, health literacy support, and adapting health tools. ⁶ Purpose-built creative spaces facilitate team collaboration and various group sizes. Effective project space makes it easy for each stakeholder, including patients and caregivers to share insights, collaborate, and exercise creativity.

Empower participants

It is critical to consider power dynamics among collaborators, especially between healthcare professionals and patients. ¹⁴ Unbalanced power dynamics often inhibit meaningful collaboration and communication leading to less effective solutions. This can be addressed by ensuring a safe space where equal participation and voices are valued. Before each collaboration session, group norms should be reviewed: each stakeholder including the patient and caregiver brings valuable and unique expertise, insights, and ideas. Emphasizing co-design’s equal partnership promotes inclusivity and mutual learning where participants feel empowered to actively listen and collaborate.

Utilize emerging technologies

Emerging technologies, such as virtual collaboration platforms, teleconferencing, virtual and augmented reality, and connected devices, offer opportunities to include patients and caregivers irrespective of their location. Digital virtual platforms (e.g., Zoom, Microsoft Teams, and Skype) facilitate real-time communication and idea sharing, thus reducing barriers to patient participation and may be particularly useful for reaching rural and mobility-impaired populations. Integrating connected devices into co-design sessions for research and care can enable real-time data capture of patient experiences and provide researchers and clinicians with more comprehensive information while reducing documentation burden. Leveraging emerging technologies can help patients and caregivers effectively interact with diabetes care, research, product, and service development. The selection of appropriate technologies should also be a co-creative process unto itself.

Conclusion

Co-design places patients at the center of the decision-making process, empowering them to actively participate and vocalize their needs and preferences in diabetes care, research, product, and service development. Co-design methodologies present a powerful approach to addressing the complex challenges faced by people living with diabetes. Some opportunity spaces for co-design are applications, devices, care environments, services, quality improvement, health disparities and equity, educating clinicians, and leveraging co-design in organizations. In addition to the opportunity spaces outlined above, co-design methodologies can be applied in any space where a patient or caregiver’s perspective is needed. Researchers, policymakers, clinicians, and leaders can embrace co-design methods by engaging patients and caregivers as active participants even when barriers to doing so are present. By prioritizing patient and caregiver insight through co-design, we can co-create innovative solutions addressing the unique challenges and needs of individuals with diabetes, resulting in a more effective and patient-centered ecosystem of diabetes care.