VALUECARE Model for Value-Based, Integrated Health and Social Care Services Delivery Supported by ICT for Older Adults

Approach used for the development of the model

A participatory co-design approach was applied to define with the participants a model of care to deliver value-based health and social care supported by ICT solutions. The design was supported by the results of a previous literature review on co-design for people-centred care and digital solutions due to the digital component of the VALUECARE project and care model [9]. This study comprised focus groups and interviews conducted with older adults, health and social care practitioners, informal caregivers, service managers and policy makers. The common inclusion criteria of older people across the 6 pilot sites were: 65 our more years old, confirmed diagnosis of the targeted chronic condition at the time of recruitment, community-dwelling, and able to give consent. In addition, according to the pilot addressed profile an extra inclusion criterion was considered:

• - Older people who had a heart attack and finished their rehabilitation in Rijeka (Croatia).

• - Older people (75 years or older) with mild to moderate frailty in Cork and Kerry (Ireland) assessed through the Rockwood scale (≤5).

• - Older people plus 65 with mild cognitive impairment diagnosis in Treviso (Italy) demonstrated through deficits in neuropsychological tests (resulting in a Clinical Dementia Rating (CDR) score of 0.5), while maintaining complete autonomy in daily living.

• - Older people with no or mild cognitive impairment, comorbidities, and lack of social and family support in Coimbra (Portugal).

• - Older people who are frail in Valencia (Spain) according to the FRAIL scale (≥1), Barthel index (≥90) and Pfeiffer SMPQ scale (0–2).

• - Older people who had a stroke in Rotterdam (The Netherlands).

For informal caregivers, the inclusion criteria were to be responsible of the care of an older person with the above characteristics – depending on the site, be 18 years old or more, and be able to give informed consent. The same for the care team, the unique inclusion criteria were to work with the above target group.

Participants from the consortium countries (Croatia, Ireland, Portugal, Italy, Spain & The Netherlands) were recruited by the local research teams. Each team employed snowball and chain sampling strategies. Finally, a total of 369 participants were involved in the participatory activities, concretely 127 older adults, 109 health and social care practitioners, 86 caregivers, 7 ICT experts, 34 service managers, 3 policy makers and 3 municipality providers.

Implementation of the participatory approach

Focus groups and interviews were conducted by local research teams in each of the participating countries with diverse experience in ageing and qualitative research. In concrete a total of 163 interviews (85 interviews with older people, 43 with caregivers, 20 with health professionals, 8 with managers and 7 with ICT experts) and 44 focus groups (6 focus groups with older people, 9 with caregivers, 24 with health professionals, 3 with managers and 2 with policy makers and municipality providers) were implemented across the 6 pilot sites and profiles. All sessions were carried out by the local researchers in their respective national languages combining face-to-face and online means trying to adapt the methodology to the pandemic situation. The common guidelines to perform the co-design activities were shared with pilot sites, consisting of:

• - Detailed description and materials to perform focus groups and interviews with the target population.

• - Tips to implement those activities online to respond to the pandemic situation and avoiding the potential digital gap of older participants.

• - Resources to facilitate participants engagement (project videos for pilot sites to explain the project) and to support the implementation of the suggested activities (templates, checklists, and ethical documents).

• - A set of questions to be addressed to each target group in relation to the VALUECARE concept and digital solution. The following images present an overview of the questions addressed to older people (image 1), health and social care practitioners (image 2), and managers (image 3), independently on the format (interview or focus group) implemented [23]. According to the context and target chronic conditions, pilots adapted the questions below.

Image 1

Image 2

Image 3

Feedback gathered from previous questions in the in-depth interviews and focus groups was used to define the concept of value, the treatment pathways and the desired IT support solution, that is, to build the VALUECARE model. Each local team sent transcriptions and main relevant quotes in English. For the analysis of the data, the eHealth Enhanced Chronic Care Model [24] was used as a heuristic tool to integrate the discourses of the different stakeholders involved in the delivery of health and social care for older adults and featuring the guiding principles and the core elements for value-based, integrated health and social care for this group supported by ICT solutions. The eHealth Enhanced Chronic Model builds upon the well-established and tested Chronic Care Model that is shown to improve health outcomes for people with chronic conditions. The original model includes six key components of the health system that encourage high-quality chronic disease care: (1) community resources, (2) health system support, (3) self-management support, (4) delivery system design, (5) decision support, and (6) clinical information systems. The enhanced model incorporates the advances on technology, demonstrating how eHealth tools can be used to increase efficiency of patients’ health self-management. As consequence, the enhanced model includes two additional elements: (1) the eHealth education and (2) the feedback loop; and expands the notion of community to include the (3) online community. These factors have been used to guide and structure the feedback received from participants in components that define the new VALUECARE model due to its emphasis on patient-centred care and self-management.

Building the VALUECARE model

In the provision of value-based, integrated health, and social care supported by ICT solutions, the study has identified the following two main agents:

1. Older adults: A successful transformation in the delivery of care for older adults requires an older adult who is well informed (Rijeka, València, Treviso, Rotterdam, and Cork/Kerry), active (Rijeka, València and Cork/Kerry) and empowered (Treviso, Rijeka), being part of the design and decision-making process of the choices regarding their own wellbeing (València, Rotterdam, Cork/Kerry, and Rijeka).

2. Interdisciplinary Care team: This team is understood as the group of health and social care practitioners, family members and informal caregivers who together, analyse, synthesise, and harmonise links between the different stakeholders into a coordinated and coherent whole, and therefore play a significant role in the lives of the older adult. The results of the co-design sessions have stressed the need for creating these interdisciplinary care teams to manage the needs of the individual and support families in the care provided (València, Cork/Kerry, Rijeka, Treviso). The specific requirements for the delivery of value-based, integrated health and social care for older needs are:

   • 2.1. Health and care practitioners: The older adults as well as the family members and informal caregivers stressed the need of the same practitioners of reference (València, Rijeka and Treviso) and a proactive care team (Rotterdam, Rijeka, Cork/Kerry and València). Moreover, practitioners as well as family members and caregivers highlighted the importance for the health and social practitioners to show strong social skills such as empathy (València, Treviso, Rijeka, Cork/Kerry, and Treviso).

   • 2.2. Family and informal caregivers: The participants in the co-design sessions highlighted the need to be prepared for the activity of caring for an older adult, by having self-care/psychological support to prevent burn-out (Rotterdam, Cork/Kerry).

According to the participants’ feedback, the VALUECARE model should consider the following features:

Continuous and close feedback loop (A): value-based, integrated health and social care should be based on a trusty relationship between the older person and their care team.

All the co-design sessions referred to the relationship between the older person and their care teams, especially their key worker (social or health professional). In this regard, this continuous and close communication accompanies the individuals in accepting and processing the consequences of ageing and their health status as well as managing their expectations (Rotterdam). Participants identified the following requirements for reinforcing the relationship between the individual and their care team and facilitating a value-based, integrated health and social care model:

1. Older people benefit from having in-person contact with the same key team of active and empathetic practitioners that provide timely, clear answers, information, and guidance (València, Treviso and Rijeka).

2. Family and informal caregivers require an improvement in the communication with the health and care team (Cork/Kerry and Treviso). Furthermore, their capacity to listening, demonstrating strong social skills (València, Treviso, Rijeka and Cork/Kerry) but also the time dedicated to the person they care for (València, Rijeka and Treviso) are key to the care delivery.

3. Practitioners emphasised the importance of good interpersonal relationships and mutual respect (Rijeka and Treviso), together with the recognising professionals’ values of professional expertise and knowledge, humanitarianism, morality, and attentive listening (Rijeka, València and Treviso).

4. Managers also value the communication flow between care teams and the individual (Rijeka, Rotterdam, València, Cork/Kerry, and Treviso), but also among the members of the interdisciplinary care team as this communication allow the care team to manage better the time dedicated to patients (Coimbra), avoid unnecessary visits (València and Cork/Kerry), fostering preventive actions (València and Cork/Kerry), etc. All these can be translated in an efficient health and social system, less consume of resources and better care provision (València, Rijeka and Cork/Kerry).

e-Health literacy and education (B): value-based, integrated health and social care should inform and empower older adults to allow them to participate in the decision-making process of their own wellbeing (València, Rotterdam, Cork/Kerry, and Rijeka), as well as highly educated care team members who are knowledgeable of the use of the new technologies in health and care delivery.

For the adoption of a change in care delivery, older persons and care team members require a good level of health literacy, education, and training. The co-design sessions highlighted the need for education and improved skills in e-health. In this regard, the persons’ participation in the decision-making process require that the individuals are informed and empowered to have the capability to decide on personal goals with the guidance of health and social care practitioners (València, Rotterdam, Cork/Kerry, and Rijeka). That is, providing them with accessible information about: (a) their own condition/disease, treatment, and what to expect throughout their condition/disease trajectory (Rijeka, València, Treviso, Rotterdam, and Cork/Kerry); (b) practical guidelines regarding their care pathway (specialists involved in the care pathway, referrals, available services, etc.) (Rijeka, València, and Cork/Kerry); (c) treatment specifications (València, Treviso, and Cork/Kerry); (d) personal health record and their own health related data (València); (e) resources where to find available support (Rijeka, València and Cork/Kerry). Moreover, the care team highlighted some self-identified needs to be addressed to successfully deliver value-based, integrated care for older adults supported by ICT solutions such as education on how to deliver timely, quality evidence-informed care for older adults.

Comprehensive support and monitoring (C): value-based, integrated health and social care should provide a continuous and complete support to older adults and their families.

Because of the previous characteristics, the value-based, integrated health and social care supported by ICT solutions will require continuous support and monitoring of the progress of the care plan by the interdisciplinary care team (Coimbra). The care plan should be reviewed and revised in line with the achievement of goals and health status to sustain and hopefully improve older adults’ quality of life over time (Rijeka). Thus, older people demand continuous positive long-term support (Cork/Kerry) not only on their health status but also in the promotion of an active and healthy living, considering the social dimension (Coimbra, València, Cork/Kerry and Rijeka), and focusing more on their wellbeing than on drugs (València). Informal caregivers asked for psychosocial support for their own wellbeing (Coimbra), reduction of bureaucratic tasks (València, Treviso and Rijeka) and in-kind help for the care they provide (Coimbra).

Health and care decision support (D): value-based, integrated health and social care should support the participation of older people in the decision making of their own care (València, Rotterdam, Cork/Kerry, and Rijeka).

The co-design sessions with members of the care team also highlighted the need of having access to the health-related information of the older adults as well as their progress in achieving the goals of the care plan (Rijeka, València, Treviso, Rotterdam, and Cork/Kerry). With the aim of providing value-based integrated health and social care for older adults supported by ICT solutions, the information needs to be integrated and shared by the older adult and all the members of their care team to provide a common understanding of the status of each individual and provide coordinated support.

Care information system/sharing (E): value-based, integrated health and social care can be supported by a digital solution also co-designed with end-users to leverage the support, monitoring and self-management of older people wellbeing and alleviate the workload of the care team and health/social system providing quality care and contributing to efficient systems. In this sense, the co-design activities reported a Wishlist of the features to be included in the digital solution that supports the value-based integrated care. Although each site provided its own Wishlist according to the different end-users, the following common desired features can be extracted:

• - The digital solution should facilitate and support the care provided to the older people and should not entail an extra bureaucratic task for older people/their family or workload for the care team.

• - The digital solution should be easy to use according to the digital literacy of older people and friendly to be used by the care team. Participants in the co-design activities stressed the need of training to use any digital solution proposed.

• - In addition to its usability, some indications had been highlighted regarding the digital solution for older people:

  • Design: font size, voice activation, use of images rather than text, adaptable to their needs, simple, and safe.

  • Content: reminders, general advice, easy to understand information, motivational messages for healthy and active living, trusty communication channel, and self-care support. In this sense, participants stated the importance of including only meaningful features and information for the older people to not over saturate them.

Regarding the digital solution for professionals there was a common understanding that the solution will contribute to the coordination of health and social care and to the quality of the care provided to older people, allowing professionals to gather information from their patients in an efficient manner and have a complete monitoring of the care proposed.

Integrated delivery system design (F): Value-based integrated care delivery requires integration and coordination of appropriate equipment and staff resources within the institution and among different agencies and sectors. Good working conditions with a balanced practitioner-patient ratio allowing quality time with each patient and an optimal use of existing resources. Planning integrated care process pathways for the prevention, monitoring, evaluation, and follow-up, and until the individual is no longer a participant of a service, would facilitate the shift towards a value-based integrated health and care delivery and the information flow.

Health and care systems change (G): From the co-design sessions, it is understood that for the implementation of value-based, integrated care models, a paradigm shift is required from a supply-driven to a person-centred demand-driven model, that enables specific health and care service delivery to the individuals’ needs and desires [25] as well as giving older adults a more active role, considering them (and, if it is the case, their caregivers) as active participants in the design of the services and the decision-making process of the care they are offered, receive and involving their community. In this regard, the principles of value-based, integrated health and social care focuses on the values of the individuals and how they would like to be supported, respecting their identity and autonomy with the promotion of self-management activities and support, considering social determinants of health, physical and psychological conditions in the care provided and meeting individuals’ expectations.

Across the key elements presented above, the following guiding principles were also incorporated to the VALUECARE Model:

1. Person Centeredness: the VALUECARE model requires putting the patient/person at the center of the care design and delivery with continuous and close feedback loop from the care team in relation to their health status and health achievements (A), empowering patient in how to promote their own health (B) and to participate in the design of its own care plan (D) thanks his/her access to their health data (E) and health literacy (B).

2. Output-based service delivery: VALUECARE model is based on the active participation of patients in the definition of their own health goals supported by the care team (A, B, C). This active role is directly linked with the health reported benefits that can be also monitored by themselves (C, E) and act as a health motivation tool.

3. Coordinated health and social care: the VALUECARE model requires coordinated multidisciplinary care teams to provide patients’ comprehensive support and monitoring (F, C) and best-informed definition of care pathways together with empowered patients (D). For that, a change of traditional care is needed to the VALUECARE person-centered demand-driven model, that enables specific health and care service delivery to the individuals’ needs and desires (G).

4. Quality and safety: quality is a recurrent adjective identified when defining the VALUECARE model to provide quality care and contributing to efficient systems. For instance, when highlighting the importance of patients’ education on how to deliver timely and quality evidence-informed care (B) and to monitor the achievement of goals detailed in the personalised care plans to improve older adults’ quality of life over time (C).

5. Technology as supportive tool: there is a common understanding that the solution will contribute to the coordination of health and social care and to the quality of the care provided to older people, allowing professionals to gather information from their patients in an efficient manner and have a complete monitoring of the care proposed (E, F).

6. Sustainability of VALUECARE model: VALUECARE model is designed according to the needs and preferences of its end-users, this approach is considered to guarantee the sustainability of the model and the effectiveness of the health and care systems because the better use of dedicated resources, that it is possible because the implementation of integrated care (F, G, E, D).

The following figure (Figure 1) represent the main features of the VALUECARE model described above:

Figure 1