Turning knowledge into insight, lessons learned To mangle a quote 'It is a truth that should be universally acknowledged that a business with a great idea for health tech must be in want of people with lived experience to help design it.' There's a real buzz around co-creation at the moment, 'nothing for me, without me' is a common cry. But how easy is it to achieve and is it the best approach? Memrica Prompt's design has been informed by and tested with people living with memory problems and early dementia. However it took more time to find those people, talk to them to understand what they needed and refine initial designs than it took to develop the current prototype app. Finding people in the right demographic was challenging. The ideal candidate was a smartphone and tablet user, who might already be creating their own coping strategies and who might or might not have a diagnosis. People often don't admit to having memory or cognitive function problems, often their families will be aware before they are but may not broach the subject, so these people are under the radar. This is as much as problem for researching disease pathways as it is for the people living with the memory problem and those who care about them. People seeking a diagnosis are in the national health system and, quite rightly, are protected against harmful or exploitative studies. Talking to patients about what they need from technology is worlds away from a clinical trial, yet there appears to be no 'light touch' route to gain access. Potentially, the NHS new Test Bed approach, now being set up, could remove this barrier. Clinical staff have been more than willing to share knowledge and have a depth of experience that has been exceptionally helpful; but they don't have a lived perspective that turns knowledge into deep insight. In some cases, clinical staff questioned whether people living with early dementia would be able to use smartphones and tablets and were genuinely surprised to hear that people regularly used these devices and were active on social networks. Their view is undoubtedly coloured by the patient population they see, which is often people with a higher degree of impairment, but it does mean that they can underestimate capability. The answer to this challenge lay with the many community groups and organisations around the UK who are doing wonderful work supporting people living with dementia and their families and carers. They have a very personal perspective and are close to their users and can ask them directly if they'd like to be involved. This makes it a personal choice and only those who are genuinely interested will participate. Coventry University's Health Design Technology Institute also sent out an invitation through their newsletter, which brought considerable interest. There were also serendipitous conversations in unexpected places that brought new people into the volunteer group. For the first test of the prototype, 20 volunteers were on board. The second challenge has been that people, whether they have a memory problem or not, find it difficult to discuss something that's outside of their experience. Talking about and demonstrating potential technologies generates excitement and interest, but ultimately confusion as interviewees tend to focus in on small details, rather than looking at the technology as a solution in a wider perspective. I quickly learned that focusing on the problems that needed to be solved was a better approach than trying to determine which features would be most useful. It sounds obvious in hindsight, but this journey started because people asked me about whether an app I had already developed could be used to support people with dementia. Since I was focused on developing technology, it seemed sensible to explore the possibilities. It did generate conversation, but didn't really get to the root of what was needed. Having been through the research phase, gathering thoughts about the problems that needed addressing, the next phase was to identify those that could be solved using technology and sift out issues that needed a different solution. The simplest approach is often the best and technology is not always the answer, but that has to be balanced against knowledge of what is possible. As a tech start up founder, it's essential to have a vision and to see beyond what people ask for to deliver a solution that's delightful, meaningful and becomes essential. This is where the knowledge gathered becomes insight and that's what delivers beautiful technology that helps people live their lives in a better way. Is Memrica Prompt at that stage yet? Well executing on that insight is the current challenge. The feedback from the first test of the first prototype highlighted some areas where things could be improved and others where it could be simplified. For the second version, some features have been removed - things the development team and I thought would be useful, but testers found confusing - and other processes have been simplified. The second version is about to go out to the wonderful group of volunteers and I'm looking forward to their feedback and insights. If you would like to be involved, please contact me at firstname.lastname@example.org.
As the UK Government launches its dementia strategy 2020, there's no doubt great strides have been made in the last 5 years in bringing this devastating disease to the forefront of public consciousness. Initiatives from Purple Angel, the Alzheimer's Society, Innovations in Dementia, Alive Activities, Dementia