Case study 5 - Digital by Default public health
Are digital health solutions, such as apps and online interfaces, suitable for vulnerable people?
Helping Hands (pseudonym) is an online and app facility to help organise a network of friends and family for vulnerable people. Northshire County Council, under their Healthy Communities Programme, have funded five Helping Hands pilot sites, the driver for the implementation of Helping Hands being the prospect of 30% cuts in Local Government funding in April 2016. Project management has been delegated to the City Centre Local Authority. Sue (SH) had previously conducted a brief evaluation of Helping Hands for the Public Health Department at City Centre. Findings suggested that carers may prefer traditional methods of communication (e.g. text, phone call).
Helping Hands was developed after the company had conducted focus groups on clinical innovation with clinicians for the regional Strategic Health Authority. The concept for Helping Hands did not come in the top ten recommended innovations from the focus groups, however, the idea of developing a digital device to help vulnerable people stay in their own homes was mentioned frequently. On this basis, and combined with reports that Helping Hands was working elsewhere, Northshire County Council decided to run a pilot scheme to explore potential for preventing admissions to hospital. This case study is following the developments in the Helping Hands pilot sites.
At the start of the research the focus was primarily on information gathering and ‘getting to know people’, and on identifying opportunities to contribute to developing and evaluating the project (e.g. feeding back to the developer about user experiences). Initial research questions were:
- What are the organisational responses to the implementation of the Helping Hands technology and what is the impact of introducing Helping Hands into the social networks of vulnerable people?
- Does Helping Hands address issues that matter to people (and if not, why not)?
- Can vulnerable people, or their carers use the Helping Hands technology?
- What does Helping Hands offer over and above ‘normal’ communication methods of phone, text or Facebook?
As the case study has evolved we have been struck by the way in which users appear to be in the background (in terms of the design and development of Helping Hands, as well as use). This has raised questions about the perceived value of Helping Hands to clients/users, commissioners, health and social care practitioners, third sector organisations and other decision makers; about user-centred design; and the ways in which the emotional aspects of people’s lives (as carer and cared for) might be side-lined or ignored. With this in mind, we think that there are some important sub-questions:
a) What role do health and social care practitioners, commissioners, planners, industry and third sector representatives have (together or separately) in designing, developing, adapting, using and supporting Helping Hands and other digital technologies?
b) Who are ‘users’? How, when, where and why does Helping Hands find a way into their lives, and what is the experience of care/caring when it does?
c) How and where does ‘emotion’ feature in the evolution of Helping Hands?
d) In what ways have plans to ‘transform’ social care shaped, enabled or constrained the development and use of Helping Hands and other digital technologies?
STUDY DESIGN AND METHODS
This is an in-depth case study collecting a mix of observation, interviews and documents. Fieldwork started in December 2015. We now have a large amount of data and have paused to review and focus in on areas/questions of specific interest. We currently have the following:
a. Informal meetings/discussions (e.g. at the start with senior executives);
b. Documents (e.g. Strategic Plans);
c. Observation (e.g. implementation planning meetings, meetings held with local third sector organisations, or seminars/events about technology);
d. Organisational interviews (e.g. with Helping Hands developers, social care decision makers; project manager); and
e. User interviews (we have now identified two users in Northshire, and have been working with developers to identify users elsewhere in the country).
In Northshire (as elsewhere) local government has faced tough spending settlements in the last 4-5 years, which – combined with high levels of deprivation, a history of poor outcomes and lack of joint working between agencies in the area have “impacted dramatically” on adult social care. As one senior manager told us: “[we are now] trying to change everything, all at once and with not very much resource”. There is a very strong sense that technological innovation – and digital innovation in particular – is the potential solution to these pressures. The vision is of large-scale, system-wide change in health and social care (guided by ‘Healthy Communities', a strategic transformation plan) in which “getting digital”, “digital innovation”, “using technologies” or developing a “digital health ecosystem” are all thought to be key to “doing things differently”. Helping Hands is considered a potential contributor to this ‘transformation’ agenda by those involved in commissioning, developing and funding it. However: (1) much of the emphasis is on potential for better outcomes, increased support for clients and carers, better support for people at home and all at reduced costs; (2) there is considerable amount of ‘marketing’ talk about the vision for Helping Hands; (3) the evidence for extending Helping Hands currently appears limited; and (4) the potential of Helping Hands for changing local provision and support currently appears small-scale. A focus on the future creates an image of Helping Hands as a successful digital solution to current pressures in social care, whilst simultaneously ignoring the messy realities of the ‘here and now’ and of people’s everyday work and lives (e.g. engaging users, or working with staff to identify ways in which they might incorporate Helping Hands in their everyday work).
Helping Hands has evolved against a backdrop of a considerable amount of talk (in policy and practice) addressing the needs of local people, developing person-focused and adaptive care, and engaging citizens in designing and developing services. However, to-date, there appear to have been few active users. By August 2016, we had identified and spoken with two people in pilot sites who have considered using Helping Hands: one of whom did not want to set up a network and another who was actively using Helping Hands along with family. Discussions with both have touched on the ways in which family dynamics or social relations have been important considerations in setting up and using the technology. For the active user, Helping Hands has provided more than a straightforward ‘digital tool’ for coordinating tasks and has taken on a significant role (for her at least) in reconstructing family relations (e.g. demonstrating the extent of ‘caring work’ she does, using the technology to try to provoke family members to provide more support). For our other interviewee, the very prospect of engaging with the technology brought forth memories of family events – recent and distant – and family dynamics that, in her view, would make it impossible to use Helping Hands (hence their not having set up a network).