Digital health technologies are becoming ubiquitous and have the potential to help citizens lead healthier lives, access better care and manage long term conditions more effectively. However, take-up and adoption of citizen-facing technologies can be patchy. One of the contributing factors to this is the lack of real user engagement and co-design when creating products. This leads to products that are not useful, preventing adoption and minimising the potential impact.
The Healthier Lives Data Fund is an exciting partnership between the Scottish Government and Nesta. Since April we have been supporting six digital health projects in Scotland that are looking to make data available and useful to citizens to help them lead healthier and more independent lives. We wanted to really challenge and support our grantees to go further than just the traditional methods of engagement and try out different ways of reaching and co-designing their products with users each step of the way.
We are halfway through the fund and the projects have been doing great work engaging with users and stakeholders over the summer. Here are five emerging lessons so far:
For many technology companies, it can be hard to access target users for co-design activities. This is where the magic of partnerships can help. Px Healthcare, are designing a new version of their award-winning app Owise for men living with a prostate cancer diagnosis. They have established a fruitful collaboration with the key organisations involved with prostate cancer patients in Scotland (Prostate Scotland, Cancer Medicines Outcomes Project and West of Scotland Cancer Network). These organisations have already carried out in-depth research into the needs of prostate cancer patients and the clinical prostate cancer pathway, which meant that Px got a headstart on learning about their user group helping to frame the rest of their co-design work.
Similarly, NquiringMinds, who are based in Southampton, have a partnership with Scottish Personal Assistant Employers Network (SPAEN), a Scottish membership organisation who support people with disabilities and / or long-term conditions or impairments to use a Direct Payment to employ Personal Assistants. This strategic partnership has meant that the company has got direct access to their target user group, who they worked with to run a very successful co-design workshop with 15 cared for people and carers in Glasgow in August, generating new insights for the design team. This engaged group of existing and potential users will provide ongoing design input and user insights as the team move into the development and testing phase of the new product.
The University of Salford is developing a new version of their FanFit app in partnership with Rangers Charity Foundation for fans of Rangers Football Club. The FitBears app will build on the learning from FanFit and use club loyalty, gamification and a healthy dose of competition to encourage fans to increase their physical activity (step count). The team have devised a detailed co-design plan to ensure that they are creating the app with users' interests at the core. To start this process, they delivered two focus groups in Glasgow with Rangers fans, to understand what people thought of the concept and to learn about any potential barriers and enablers to using the app. Interestingly, there were some differences in how men and women envisaged they would use the app. Female fans were excited about the communication and socialisation aspects of the app and male fans were more focused on the step competition elements.
A big learning from all of the projects is that co-design is not a one size fits all exercise. Projects need to think about the characteristics and circumstances of the users they are trying to engage and adapt their plans accordingly. University of Edinburgh are developing an app for the parents and carers of children going through the stressful and confusing process of getting an autism diagnosis, which can take up to a year. Initially, the plan was to hold a co-design workshop with a group of users in the summer but recruitment was proving difficult, even with the help of their partners (The Salvesen Mindroom Centre and Colouring Outside the Lines), as many parents/carers found it challenging to give up the time to attend sessions.
The team decided to try another approach and designed an engaging survey that was circulated by their partners to their lists. The response was overwhelming with nearly 120 completed surveys - the majority of which were parents. The survey results illustrated a real appetite for the product which was great early validation, with parents reporting they were stressed doing the process, had low support and thought that an app to help them plan for appointments and navigate the complicated process would be helpful. Obviously a survey is not deep co-design, however, it was a way for the team to start to generate insights and identify an engaged user base. 60 per cent of respondents indicated that they want to be involved in further testing and engagement.
Additionally, University of Salford are taking a mixed-method approach. The plan is to recruit a small number of fans to work closely with the team in order to really understand their experience of using the app and gain their insight. They will also be looking to get feedback from the larger Rangers fan base through a survey and targeted focus groups.
Another learning from many of the projects was the importance of going to where your users are. CogniHealth are developing their app CogniCare - a digital companion for carers of people with dementia - to include more personalised support using Amazon Alexa’s voice technology. They've attended many local support groups to access people affected by dementia but also, interestingly, have started travelling outside of Edinburgh to work on a one to one basis with a couple who are in their 80s (the husband has dementia and the wife is a full-time carer). This relationship has generated lots of fruitful insights showing that you don’t always need large amounts of people to co-design with - sometimes going deep with a few people can be equally as useful.
Another grantee, Pharmatics, are developing new artificial intelligence-driven software (CareAI) to support self-management of people living with Chronic Obstructive Pulmonary Disease (COPD) – one of the major causes of morbidity and mortality in the UK. In order to engage people with the development of their product, they have taken an unusual route - singing groups. They are engaging with patient support group The Cheyne Gang based in Edinburgh, Glasgow, and the Scottish Borders, who have developed singing exercises to help people with lung disease to manage their condition better and improve health-related quality of life. Through interviews with attendees at these groups they have gained unique insights into living with COPD which have fed directly into the plans for their product.
It’s important to recognise that people helping co-design digital health technologies are doing the projects a huge service. Volunteers and testers can get “focus group fatigue” from participating in too many engagement activities.
For example, CogniHealth found it challenging recruiting families affected by dementia to their focus groups as there are lots of current studies in the dementia space that are recruiting volunteers. They found that people can be overwhelmed with requests and do not have the time to attend multiple sessions. To overcome this, they have piggy-backed on meetings and groups that were already set up. By using this approach, they have managed to run six different co-design sessions - three with health and social care professionals and three with carers and people with dementia.
Similarly, this is a challenge facing Px Healthcare. Prostate cancer patients are vocal and participative but the company found that it was often approaching many of the same people who have already been engaged by other partners in this space. The team have decided to move their user focus groups to the Maggie’s Centre in Lanarkshire where the patients have not yet been exposed to previous workshops and will be able to provide new feedback on their needs and the use of the OWise platform.
It’s also worth adapting the language used when engaging with people who have participated in numerous engagement activities. Px Healthcare have been advised that it’s better to offer them the chance to build on the previous learnings e.g. ‘Earlier research has highlighted that your needs are X, we would like to build on this by X.’
The other side of co-design is engaging early with health or care professionals to get their input on how the product could help the people they work with and how it could be integrated with the delivery of their care. Many digital health technologies we see seem to be designed in a vacuum not thinking about the professional, technological and cultural contexts that the professionals are working in. CogniHealth have run a number of co-design sessions with health and social professionals to find out more about how they could recommend or use CogniCare to help support the carers they work with. They learned that some people with dementia can find the experience of using smartphone technology overwhelming. To address this CogniHealth created explanatory videos on Youtube, and provided training sessions for dementia link workers in Edinburgh and Inverness, so they can support carers.
The Px Healthcare team have been supported by a renowned consultant urological surgeon from the Beatson West of Scotland Cancer Centre who provides detail on the personalised medical support that the OWise prostate cancer platform will include. His insights have helped the team to develop features and tools to support patients with shared decision-making and remote monitoring, as well as reducing anxiety.
The importance of co-designing digital health products is not a new concept, and the available engagement methods are many. The nuances and intricacies of living with a long term condition, or changing a health behaviour are complex and should be an essential part of any design process. Our six grantees on the Healthier Lives Data Fund are learning how to be adaptive, ensuring that users are engaged using a method that is appropriate to them, in a place that is suitable and in a way that isn't repetitive. They have also partnered with the right people, and considered many different types of users, including health professionals. We hope that by integrating the learnings from these co-design activities, they will build products that will achieve the desired impact of helping people take control and lead healthier, and more independent lives.