The ValueCare Project: Supporting older persons’ well-being using co-designed technology

Description

The ValueCare Project is a European research project, funded by Horizon2020, which seeks to co-design and deliver integrated care to older people living with chronic health conditions to improve their quality of life, as well as their care providers, and support the sustainability of healthcare systems in Europe, including 17 Consortium partners and seven large-scale pilots. The vision of the project is to co-design value-based integrated care with key stakeholders (older people, family or informal caregivers and health and social care providers) which will be supported by digital health technology and tested in a multinational pilot. The ValueCare Project and its inclusive co-design approach align with several components of the nine pillars of integrated care, namely digital solutions, people as partners in care and shared values and vision.

In Ireland, the aim of the study is to create technology to support older people living with mild or moderate frailty in the community setting of Cork and Kerry. Digital health technology is intended to promote and support a healthy lifestyle and behavioural changes while connecting them to community-based health and social care providers. In this context, frailty refers to a distinct health condition related to the ageing process whereby multiple physiological systems gradually lose their intrinsic capacity, yet the effects can be delayed and reversed with timely and appropriate interventions such as supported self-management and care planning. Recent figures in Ireland show that frailty affects 21.5% of people over the age of 65 in Ireland. Frailty can result in a significant increase in the number of times an older person visited their general practitioner and significantly impacted the rates of unplanned hospital care in Ireland. As such, frailty has a significant cost and impact on both older people in their need in accessing necessary care and the health service to provide the level of care to manage the condition. In essence, The ValueCare Project pilot seeks to improve the frailty integrated care pathway using a co-designed digital health technology that is grounded in the experiences of individuals living with frailty and their care providers in Ireland.

Within this project, co-design refers to the process of collaborating with older people to develop a new value-based integrated care model supported by a digital solution that promotes older person health and social goals, supports informal caregivers and improves healthcare professional working conditions in clinical practice. Co-design was chosen as an appropriate methodology to explore and identify the values and care needs of older people. Acknowledging the iterative nature of co-design, three rounds of co-design were conducted: the first round was conducted to assess older people’s priorities and preferences regarding their care as they age, the second round focused on discussing potential solutions to meet these needs and the third round involved an initial test of the technology before commencing the pilot. Focus groups and one-to-one interviews were conducted via teleconferencing software and telephone methods. While traditional co-design is typically conducted using in-person workshops, focus groups were chosen for the digital setting to capture lived experiences within a group setting. This approach was particularly pertinent in understanding the needs of older people and the condition of frailty given that a group dynamic can make visible how people articulate and justify their own ideas in relation to others. Nevertheless, the research team also included the option of one-to-one interviews (via telephone) to be inclusive of individuals who would be unable to access the digital setting or did not feel comfortable discussing their experience in a group environment. Focus groups were conducted by both the lead researcher and older person researcher, while the one-to-one interviews were conducted by the lead researcher.

The outcome of the co-design process resulted in a virtual coach-based wellness app that promotes education and self-management in four keys areas that older people wanted support with: physical activity, nutrition, medication adherence and social connection. The app allows participants to set and track weekly goals in these areas that will be monitored by health professionals.

The ValueCare Project in Ireland is being conducted in collaboration and to support the work of the National Integrated Care Programme for Older Persons (NICPOP). The National Integrated Care for Older Persons (NICPOP) is a multi-faceted approach to designing and delivering integrated care across local communities and hospitals between providers, users and carers in Ireland. The technology was planned to trialled within the new HSE integrated care hubs which are geriatrician-led and community-based multidisciplinary care centres for older people in Cork and Kerry. The project is scheduled to recruit 240 older people in Cork and Kerry, whereby 120 participants will test the app and 120 will receive standard care to facilitate evaluation.

The project is in progress and the technology is currently being tested by older people.

Aim of Initiative

The aim of the project is to evaluate how co-designed technology can be used to promote self-management in the community, which is based on the priorities and preferences for care and well-being of older people. This is a two-phase project including (1) the co-design process with older people, family caregivers and health and social care professionals/manager and (2) a large-scale pilot of the technology including 240 older adults to assess the effectiveness of improving health outcomes and evaluate their lived experience of using it in their everyday life.

Who is it aimed at

The initiative is aimed at older people (65+) who are living in the community, their family caregivers and health and social care professionals/managers in the Cork/Kerry region.

3 Steps critical to success

1. Stakeholder Mapping and Relationship Building

   As the research team were based in Dublin and could not physically meet or engage potential participants in person for the co-design process during the Covid-19 pandemic, it was essential that the aims and objectives of the study were explained clearly and what would be expected of older people if they decided to participate. To access participants, the research team recruited local gatekeepers from organisations that actively engage older people in Cork and Kerry e.g., day-care centres, age advocacy groups and older person councils. The National Steering Group in Ireland which comprised organisation representatives who worked in the area of older person care and integrated care advised on potential effective gatekeepers. As the research team were keen to gain urban and rural perspectives to represent the region, they contacted local community initiatives for recruitment. All gatekeepers involved were not known to or had a prior relationship with the research team and, similarly, were unable to meet in person to discuss the project. Therefore, the research team needed to meet gatekeepers using teleconferencing to explain the study (particularly to explain the study requirements) so that these gatekeepers were mobilised with knowledge when approaching potential participants. This meant that the gatekeepers introduced the study, in broad terms, to older people who could then agree to be contacted by a member of the research team (including name and organisation of the researcher) to discuss it in more detail. Gatekeepers were also pivotal in explaining the needs of older people to the research team and sharing their expertise such as avoiding the medical term ‘frailty’ as it has negative associations and the need for short periods for interviews and focus group sessions.

2. Evaluating Digital Technology Literacy amongst Older People

   As the aim of the research was to co-design digital health technology to support integrated care, it was important to understand older people’s existing knowledge of and engagement with technology. The research team developed a digital literacy survey that was specific to older people to assess their understanding of devices, apps and communication tools, as there was not one available. Questions were adapted from other technology literacy surveys which were not specific to older people. The survey was reviewed by an age advocacy group to ensure comprehensibility and avoid bias. The survey was piloted with two older people before administration.

   This short survey was completed with the researcher before their co-design session whereby they could indicate which technology, if any, they used, for what purpose, how often and whether they required help in using it. The survey contained a plain English explanation of what technology refers to and images of the specific devices (i.e., laptop, smartphone, apps) to help participants understand the questions. This survey also included demographic questions which were age-sensitive i.e., asking their age at the end of the survey rather than the beginning. The survey has now been peer-review published.

3. Empowering and Educating Older Adults to use Technology

   For participants who took part in the co-design process in an online setting, it was essential for the research team to support them in setting up the software and training them in how to use it. This involved a short Microsoft Word document, including screen-grabs and lay-person download and user instructions that avoided technological jargon, to guide the participant in using Zoom. The research team also conducted training sessions with each participant in which the team member telephoned the participant while using their computer or laptop to guide them through accessing the software. The training sessions with participants lasted between 30–50 minutes. In some cases, the research team also liaised with the participants’ family members, with the consent of the older person, to help set up the software and provide help on the day of the session. Some family members advised the researcher on the language to use when explaining technology to their relative and how to best guide them in the session.

3 Challenges in Planning / Delivery

1. Impact of Covid-19 on Co-design Process

   While the intended research project co-design methodology and protocol followed the traditional iterative, in-person workshops to create the digital health technology, the Covid-19 pandemic meant that standard in-person procedures for data collection were suspended. This event compelled the research team to rapidly pivot their approach and utilize new methods to capture the lived experiences of older people from their home setting. Pivoting the co-design process to a digital setting using Zoom and other communication mediums meant that the research team could not use a number of the tools available during in-person co-design workshops such as traditional idea mapping or role-playing. As such, the research team could not simply directly transfer the intended methodology to a digital setting as it may not have been appropriate or effective in capturing older people’s lived experiences. This challenge was successfully overcome and the research team published guidelines for future researchers to engage older adults in this process.

2. Recruitment Strategy

   HSE ICPOP Hubs in Cork and Kerry were chosen as a suitable setting for the project for participant recruitment i.e., providing integrated care to older people (65+) experiencing frailty and care is provided by a geriatrician-led multidisciplinary team. While patients fit the study criteria for mild or moderate levels of frailty, they may have other health conditions or life circumstances that prevents them from taking part. This required the research team to expand their recruitment approach to include more older person organisations such as Active Retirement and DayCare Centre Network and wider campaign in the local news outlets to achieve the recruitment target of 240 older people in the Cork/Kerry region.

3. Ethical, Data and Legal Governance

   A key challenge in the planning and rollout of the project was navigating the ethical, data and legal governance both at university and HSE-level for the project to be conducted. This involved ensuring that correct approvals, contracts and data processing agreements were approved and in place prior to data collection. A significant amount of time was invested in achieving approval for the project to commence and the team did experience delays in comparison to pilot countries.

3 Outcomes / Benefits

1. Person-Centred Technology

   A key benefit of this project is that it avoids assuming or prescribing what older people would find helpful and asks them directly, which has formed the basis of this person-centred technology. The co-design process provided an in-depth understanding of older people’s priorities and preferences for care and well-being in the region of Cork and Kerry. Additionally, the co-design process gave rich information regarding older people’s attitudes to technology and how they would like to use it or be supported by it in the future. The co-design process also included the experiences of family caregivers and healthcare professionals/managers about what they believe would be helpful and feasible in the current healthcare context in Ireland.

2. Guidelines on Conducting Co-design with Older Adults in an Online Setting

   As there were no guidelines on how to conduct co-design in an online setting with older adults, the research team have published a peer-reviewed article which highlights the steps and considerations that researchers should be aware of when embarking on co-designing with older people in a digital setting. This article describes the method that promotes inclusivity and the empowerment of older people as equal collaborators in the research process. These guidelines and recommendations can be applied to any topic related to older person health and well-being. https://ijic.org/articles/10.5334/ijic.6546

3. Informing the Future of Older Person Digital Health within HSE

   This project has been a collaboration with the HSE’s Integrated Care Programme for Older People. This is the first project of its kind, not only in terms of co-designing with the intended users but implementing into clinical practice. This project has highlighted to clinical teams in Cork and Kerry the steps and requirements of implementing technology that can promote self-management and self-care amongst older people in their setting. As health policies are increasingly emphasising digital health, this project provides a first step and reference point for older person healthcare professionals in how to develop and implement future innovations.