The role of patient groups in shaping technological innovation

How do you see the role of patient groups in shaping the direction of technological innovation?

The first job for us has to be to surface unmet need. 

Progress in the technological sphere is often driven from the supplier side. People developing technology, such as an app for managing a condition, don’t always start by thinking about what is known about the unmet needs in the population of patients they’re trying to serve. That’s a real problem and patient organisations can play a helpful role there.

Patients don’t usually describe their needs in the same terms as the system. So a system perspective might want to manage a rise in rates of A&E attendance, but the patient would say that, in a crisis, even a very predictable one, their need is to get help quickly and they don’t know how to get hold of someone who knows about their care and therefore they go to A&E.

Patient organisations can bring these insights to the surface, and an organisation like National Voices can aggregate and amplify this information. I am hoping to strengthen our ability to do this crucial work of synthesising and bridging. 

How can patient groups support the spread of new technology?

Further along, when you’ve tested and evidenced something, and you can say this is worth pushing into the system, then there is a lot that patients can do in accelerating the spread and uptake of innovation. 

Many condition-specific charities see it as part of their role to inform their patient communities about important innovations. They can play a role in equipping patients to say to their doctors or commissioning groups, 'why can’t I have this thing that NICE has decided works and is good value for money?' The other thing that patient charities do is to help raise awareness among health care professionals. They often convene networks of interested practitioners so they can share information about new treatments or technologies and help ask the right questions about how pathways need to change. Without a big fanfare, charities do a lot of work in spreading best practice into professional communities.

Where can technological innovation improve patient care and what are patient groups doing to support this?

When I look at what communities of patients are experiencing, I see four distinct categories. 

The first category relates to our transactional interactions with the system – booking appointments, letters, referrals, test results, etc. Patients develop ways of trying to hang on to things in a way that makes sense to them, and patient groups and organisations do important work in this space, helping to improve the transactional interactions we have with the system. Patients clearly need and want these interactions to improve. This is an area that every other sector in society, apart from health, has modernised. Even local councils, which have been cash-strapped for the last ten or so years, have modernised their interactions with people and digitalised many of their systems.

The second category is about care coordination. Once you’ve got your appointment, wouldn’t it be great if the person in front of you knew all the relevant information about you? As well as talking to you about your diabetes, they are aware of the fact that you have COPD, depression or asthma, they know about possible drug interactions and they can see you’ve been waiting for a test result or a referral. As patients, we don’t want to have to constantly repeat everything. Care coordination is one area where technology and digitisation have a massive contribution to make. Some patient charities are working in this space, but there is a problem if their innovations don’t interface with NHS systems, so there’s a limit to what patient organisations can do on their own without the NHS working in more integrated ways too. 

The third area patients have an interest in is self-care. In chronic condition management, most of the work happens when you are not with the health care professional. There’s a lot that could be done with technology in terms of self-care, whether that’s tracking symptoms and side-effects, or keeping on top of medications. Self-care also means emotional support and there’s a lot of innovation in this area, including charities working on technologically enabled peer support models. 

The final category goes beyond ‘me and my care’ to ‘me and the system’. Patients have an interest in data being used to improve services and deal with unwarranted variations. NHS services are often unaware of what the data they generate could tell them. Some patient organisations use data and surveillance tools to understand what’s going on and play that back to the system. Sometimes it takes people with a very vested interest in these outcomes to say, ‘There’s something you should know about the quality of diabetes care you deliver here and how up the road they do it three times better because they have a decent foot care team’. 

What lessons can be learned from the work patient groups have done so far?

Initially, some charities looked at developing digital tools that would help a person with high blood pressure to monitor their symptoms or help someone with irritable bowel syndrome to record what works in managing their condition. But what they found was that these innovations are of little value if they aren’t connected into GP or other NHS systems. Technological innovation needs to happen alongside pathway and patient record redesign, and that becomes complicated. That’s one of the lessons charities have learned. 

Another thing that’s surfaced in conversations is that the way an innovator thinks in the commercial sector is, ‘I’m not trying to do something for everyone, I’m trying to do something for this very small cohort of people who are digitally empowered and self-motivated’ and that can be uncomfortable for charities. I think if we want to make progress with developing technologically enabled support, we have to be comfortable with the fact that different products will work for different people. It’s vital that we stay very focused on the inequalities angle, and actively use technology to address disadvantage, but we shouldn’t start from the assumption that if a peer support offer doesn’t work for every single person then it’s not a good peer support offer. 

At National Voices, we’re starting to work on capturing more learning in our sector. We’re asking our members to tell us about innovation, especially in the digital space, so we can bring that together and understand what the trends are and what seems to be working. 
 

This content originally featured in our email newsletter, which explores perspectives and expert opinion on a different health or health care topic each month.