Background
Timely administration of Parkinson’s medication is key to preventing symptom progression and worsening. However, many people with Parkinson’s experience challenges adhering to complex regimens, increasing the risk of symptom exacerbation, avoidable hospital admissions, and reduced quality of life. Preventive, value-based strategies that support medication adherence are therefore essential; however, existing educational interventions are limited in scope. Few address carer needs, none are co-designed with patients or are grounded in behaviour change theory, and there remains a distinct lack of digital resources, restricting their potential to deliver sustainable, preventive impact.
Aim
To co-design the content for a digital educational resource that supports people with Parkinson’s and their carers in managing medication adherence, using the COM-B model for behaviour change.
Methods
A mixed-methods design was used to understand medication adherence in Parkinson’s. A scoping review was conducted, followed by a cross-sectional online survey (n=509) assessing factors influencing adherence using the Medication Adherence Report Scale (MARS-10) and self-efficacy using PROMIS® Self-Efficacy for Managing Medications and Treatment. Individual interviews with people with Parkinson’s (n=12) and caregivers (n=8) explored experiences and challenges in greater depth. Qualitative data was analysed using the COM-B model to identify behavioural determinants influencing adherence providing the foundation for subsequent co-design of an evidence-based digital educational resource.
Results
95% of survey participants (n=485) reported difficulty with medication adherence to some degree with 15% (n=78) experiencing significant challenges. Self-efficacy was the strongest predictor of medication adherence (p < .001). Levels of daily support required also influenced adherence. Medication-taking behaviours and attitudes were influenced by fluctuations in functional ability, cognitive and psychological changes, perceived impact of medication, and the desire to preserve independence and quality of life. Medication self-efficacy was found to be a dynamic, co-constructed process shaped by adaptation, trust, and support networks. COM-B domains of reflective motivation and psychological capability were core drivers of medication-taking behaviour with physical opportunity representing the main potential facilitator. People with Parkinson’s and their carers expressed a need for an integrated package of personalised, practical, and professional support to build confidence in medication adherence.
Conclusion
Medication adherence in Parkinson’s is shaped by fluctuating abilities, psychological factors, and available support, influenced by interactions between self-efficacy, capability, opportunity, and motivation. Findings highlight the need for preventive, technology-enabled approaches that sustain adherence and reduce avoidable deterioration. By integrating evidence from multiple methods and stakeholder perspectives, this study establishes a foundation for a co-designed, theoretically informed, evidence-based digital educational resource that promotes proactive self-management, supports carers, and contributes to value-based, preventive care for people with Parkinson’s.
Implications for Integrated Care
Integrating behaviour change theory into co-designed digital education could equip people with Parkinson’s to sustain medication adherence and effective self-management. Through timely digital support, this intervention will aim to enhance communication between patients, carers, and healthcare providers while preventing avoidable medication errors and the associated costly reactive care. Embedding this resource within care pathways could promote proactive, coordinated care and support a value-based model focused on prevention, empowerment, and sustainable improvements in quality of life.

Dynamic Networks for Person-Centered Integrated Care: A Personalized Integrated Care Approach
Presenting Author Dr Roelof Ettema
Affiliations: University of Applied Sciences Utrecht
Co-Author MSc Marlou de Kuiper
Co-Author PhD Barbara Sassen
Co-Author PhD Ruben van Zelm

Background
People with complex needs require support across multiple interconnected life domains: social participation, mental wellbeing, meaning-making, and physical health. Most parts of current healthcare systems remain fragmented, with separate organizations focusing on single domains rather than the whole person. Dynamic networks that bring together diverse formal and informal caregivers offer a promising solution to deliver truly personalized, integrated care that responds to what matters most to individuals and their communities.


Approach
This practice-based initiative employed comprehensive co-design across three organizational levels, actively involving patients, informal caregivers, healthcare professionals, managers, administrators, funders, and students throughout:

- Micro-level (direct care): Co-created collaborative care arrangements with clients, informal carers, and diverse professionals, establishing dynamic networks around individual needs.

- Meso-level (organizational management): Developed structures and processes to organize, coordinate, and sustain dynamic networks across traditional organizational boundaries.

- Macro-level (systems and policy): Explored how accountability frameworks and financing mechanisms can support rather than constrain network-based care delivery.


Results
Engaging diverse stakeholders across multiple levels yielded important insights:

- Micro-level findings: Informal caregivers demonstrated strong motivation to participate when approached through a strengths-based lens focusing on their unique talents and contributions, rather than traditional duty-based frameworks. This inclusive approach enhanced network capacity and sustainability.

- Meso-level findings: Participants naturally adopted distinct but complementary generic roles within networks—'organizers' who coordinate activities, 'direct supporters' providing hands-on care, and 'indirect supporters' offering specialized input. Understanding these roles enables more intentional network composition and development.

- Macro-level findings: Significant tensions emerged around accountability. Current systems expect collective accountability from networks while maintaining individual responsibility frameworks unsuited to collaborative models. Existing accountability approaches proved unsustainable, particularly for informal caregivers, necessitating fundamental shifts toward shared, societal responsibility models.


Implications
This work provides practical frameworks for international delegates implementing community-based integrated care that strengthens workforce inclusivity and addresses inequalities:
• Operational guidance for establishing fluid, person-centered care networks across micro, meso, and macro levels
• Inclusive workforce strategies that recognize and leverage informal caregivers' talents alongside professional expertise
• Critical requirements for organizing sustainable dynamic care networks in diverse contexts
• Accountability innovation needs highlighting gaps between collaborative care realities and traditional governance structures
• Multi-level policy recommendations for local, regional, national, and European contexts to facilitate rather than impede dynamic network care

Further work continues on refining accountability features and developing enabling policies that support this collaborative, community-based model.

Navigating health and wellness services in Frontenac, Lennox & Addington (FLA) can be challenging. To address this gap, the FLA Ontario Health Team (OHT) developed Find Services, a digital navigation tool integrated into the OHT’s public-facing website. In the absence of a complete provincial directory, this tool helps residents locate local and provincial services by need and location. The project aimed to ensure accessibility, bilingual functionality, and inclusion of diverse community needs while laying the groundwork for future transition to Health811.

The tool was co-designed with the FLA OHT Community Council, 23 community members who were engaged as equal partners throughout the development process. A subgroup of volunteers tested the tool, reviewed service listings, and validated categories, language, and functionality through four meetings over five months. Feedback directly shaped tool improvements, such as refining search features, adding bilingual capacity, improving address searches, and incorporating filters for Indigenous and French-language services.
“As a Community Council member, I supported the idea of adding a local service search function to the website,” says Brenda Luffman, who was part of the co-design subgroup. “We discussed what the tool could look like, what types of services it should include, how people would navigate it, and even where the link should appear on the site. Having experience as a caregiver and navigating services for elderly parents, I was familiar with several services that needed to be included,” Brenda shared. “I was also able to test how easy it was to use the map function, search for general versus specific services, and navigate the site overall.”

The co-design process resulted in a tool that is not only functional but trusted and meaningful for the community. It reflects local voices, strengthens trust between the OHT and residents, and demonstrates the value of community partnership in digital health innovation. Importantly, it highlighted the power of co-design to reduce barriers, increase inclusivity, and make care navigation more accessible. Improve navigation to health-care services for people within the FLA region.
Cp-design work included:
• 59 organizations and 335 services mapped, including all Health Homes and their services.
• A user-friendly, bilingual search interface with advanced filters was developed.
• Recommendations led to concrete changes such as keyword search, simplified fields, and better regional relevance in address searches.
• Community members validated usability, tested map functionality, and ensured relevance to diverse lived experiences (e.g., caregivers, digital comfort levels, Indigenous and Francophone perspectives).
• Discussions led to developing and refining a communications approach using simple, clean language, messaging that related to individuals

The Find Services tool showcases how OHTs can leverage co-design to improve access, equity, and trust in local health care. The lessons learned are relevant to other regions and systems working to balance digital transformation with meaningful community engagement.

Background: My Diabetes My Way (MDMW) is an online platform for people living with diabetes that the University of Dundee developed for NHS Scotland. It has been live since 2008 and offers multimedia educational materials, video testimonials, 15 online structured learning courses and patient access to their own data. The service is accessible through a web browser or mobile app.

We aimed to report the latest utilisation figures and evaluate the impact MDMW has had on patient satisfaction and qualitative and quantitative outcomes.

Approach: People with diabetes are heavily involved in the design and co-production of the MDMW service, and in 2023 evaluation questionnaires were circulated to 22,665 users to gain insights on their experiences and to request suggestions for improvements. The service also operates a Patient Advisory Group, with representation across genders, ethnicities and geographical locations in Scotland.

The MDMW Personal Health Record sources data from primary care, secondary care, specialist screening services and laboratory systems; including diagnostic information, demographics, process outcomes, screening results and medication. These data provide a more complete overview of diabetes than would be available from any single system. Patients can share home-recordings (blood pressure, weight, PROMs) and device data (blood glucose meters, activity trackers) with their healthcare teams, further enhancing communication.

At the end of 2024 user audit and activity logs were analysed to document current levels of uptake and use. These data are essential to demonstrate the effectiveness of the service and justify future funding. Health economics analysis was conducted using the UKPDS Outcomes Model v2.0.

Results: By the end of 2024, 87,988 people with diabetes had registered on MDMW and 46,569 had logged in to access their diabetes records. 5,255 had registered for at least one structured education course (total courses = 21,546). An average of 27,236 people accessed 119,523 pages on the education website every month.

People living with diabetes report that MDMW improves their knowledge of diabetes and provides the information and motivation to more effectively manage it better and achieve goals. They believe that it allows them to make better use of consultation time, and they don’t need to keep paper records or phone for results. Users found data graphs helpful to monitor changes and the system helped them meet their diabetes goals.

Health economics analysis has shown that MDMW could help save the UK NHS £118.72 per diabetes patient over ten years, leading to savings of several millions of pounds. The service is ‘dominant’ over usual care (both cost-saving and life improving) in supporting self-management. Wider use may result in significant cost savings through delay or reduction of long-term complications and increased life expectancy in Scotland.

Implications: MDMW is one of the most effective interventions currently available to support diabetes management. User satisfaction is high, and quality of life improvements have been shown. The clinical outcomes of users are positive, and cost-savings have been demonstrated. The platform has been rolled-out to regions within NHS England and we aim to make it available in other countries outside the UK.

Background
Integrated care is widely promoted as a way to improve health outcomes and service experiences, yet people’s voices often remain peripheral in design, evaluation, and reform. This study foregrounds how individuals living with chronic conditions perceive and influence integrated care within their everyday lives.
Approach
Drawing on a doctoral case study involving 11 purposively sampled participants enrolled in a publicly funded integrated health service in metropolitan New South Wales, Australia, this interpretive qualitative research used in-depth, semi-structured interviews to explore how individuals understand, evaluate, and make sense of their care. Analysis was conducted through progressive focusing and heuristic methods of understanding, interpreting, and theorising, informed by social constructivist, feminist, and pragmatic perspectives. Participants were not research subjects, they were active meaning-makers and, in many cases, change agents in their communities.
Results
Participants expressed diverse, deeply reflective perspectives on their experiences of integrated care. They described integration as a process that unfolds in moments of relational connection, rather than a fixed structure or service model. Participants evaluated their care experiences in relation to what mattered most to them, such as dignity, trust, continuity, and the ability to contribute to their communities. Many held nuanced insights into systemic constraints and shared practical ideas for service improvement. Several described advocating for peers, educating providers, and shaping service awareness, revealing an often-untapped potential for people to lead integrated care reform from the outside in.
Implications
This research contributes original evidence on how integrated care is experienced and understood by people living in the community, not as passive recipients, but as active collaborators in care. It provides a window into how integrated care manifests in the everyday lives of individuals managing chronic conditions outside hospital settings. The findings highlight the importance of recognising integration as something people experience relationally, in moments of human connection, rather than through structural service models alone. The participants’ evaluations reveal what matters most to them, being continuity, dignity, trust, and a sense of agency. Importantly, participants shared practical ideas for improvement and took action in their communities, offering a compelling case for embedding lived experience in governance and evaluation. These insights support efforts to strengthen the impact of community-based integrated care, reduce unnecessary hospital reliance, and foster local capacity for co-produced change. They are transferable across international health systems seeking to design and sustain responsive, relational, people-driven integrated care models.
References
1. Patterson KD. Ordinary and extraordinary acts of integration: People’s perceptions of integrated health care within their everyday lives [doctoral thesis]. Sydney (NSW): University of Technology Sydney; 2024. Available from: https://hdl.handle.net/10453/178169
2. Patterson KD. Why understanding what matters to the patient matters. J Integr Care. 2017;25(1):17–25.
3. Patterson K, Jackson D, Travaglia J. Help me understand what is important to you: Co-designing outcome measures that matter to people. Int J Integr Care. 2019;19(4):532.
4. Patterson K, Cockburn J. Neighbourhoods for Wellbeing (N4W): Modelling and embedding codesign as a mindset and a way of working from the get-go. Int J Integr Care. 2019;19(4):206.