Shedding light on service design involving patients and the public

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One of the most satisfying aspects of patient and public involvement (PPI) is the ability to look back at a project and clearly see how the patient voice had meaningful impact. Using patient insight data to influence change is a lengthy process, with the ‘truth’ emerging slowly during systematic analysis of all the data that’s been gathered over the preceding weeks, months or years. Much rarer are the occasions when something emerges during a lone workshop or focus group that is clearly going to redefine the way you think about a particular problem; the 'lightbulb moment'. 

Meaningful engagement with a broad cross-section of the population is central to the approach that the Surrey Heartlands integrated care system (ICS) is taking to service transformation. From the outset, senior staff guiding the transformation were resolute that the ICS needed to properly understand its population’s needs and perceptions in order to successfully transform services.

With success driving demand, this citizen-focused approach has become embedded in change projects right across the ICS. One of these projects has been bringing clinicians, pharmacists and citizens together as part of a long-running piece of work to help close the hypertension diagnosis gap. We know there are too many people in our population unaware they have this disease and if we find, diagnose and treat them, we could prevent many heart attacks, strokes and premature deaths. We also know those who are most at risk are least likely to take part in screening programmes like the NHS Health Check

We’ve been working on a simplified version of this check that doesn’t require patients to make an appointment and can be run in a community setting by a qualified professional, such as a pharmacist. This is known as the ‘BP Plus’ approach and originally proposed measuring core variables, such as blood pressure and heart rhythm. It also initially included some basic lifestyle questions around diet, exercise, alcohol consumption and smoking – all well-known risk factors for hypertension.  
During the final co-design phase of this project, pharmacists and patients raised concerns about the time needed to ask people about their lifestyle. They feared these questions would discourage people from having an on-the-spot check. The lightbulb moment was provided by a member of the public, who asked, ‘If you’re interested in finding out if someone like me has high blood pressure, why are you asking for all this other stuff when you know it’s going to put me off having the test?’ 

We didn’t really need to wait for the analysis to know that they had spotted something we’d all missed: BP Plus should stick to its fundamental aim of finding people in the community who had undiagnosed high blood pressure. All these extra questions were only going to discourage these people from accessing it. We proceeded with our analysis process, and, unsurprisingly, it told us the very same thing.  

In my 18 years as a researcher I’ve seen clients rendered speechless by the ability of one member of the public to cut through all the detail obscuring the big picture. Sometimes a fresh pair of eyes on a problem can provide the lightbulb moment that’s missing for people who have worked too closely on a subject for too long, and this was one of those occasions.

At this point, you could be forgiven for thinking that we should all be doing PPI to search for these lightbulb moments, but you’d be wrong. While they’re a great influencing tool they can’t be planned or predicted. When they emerge it’s just good fortune.  

Good PPI needs to be based on a systematic method that starts with clear and well considered objectives and ends with compelling evidence that meets those objectives. The BP Plus project has involved dozens of carefully selected GPs, pharmacists and patients in hundreds of hours of guided discussion following a robust qualitative method, backed up by survey results from our Citizens’ Panel and based on existing best practice. While the lightbulb moment on this project was a bonus, we should remember that’s all it was.  

A robust and objective-focused research process, which takes a systematic approach to recruiting the right participants, poses the right questions and uses an appropriate methodology, will always produce very similar or identical findings. This would be the case no matter how many times the project ran, assuming the methods for researching patients were equally well planned and robust from outset. 

It’s great that our colleagues in the NHS and the public sector are seeing that there’s real value in understanding and utilising the experiences of staff and consumers of services, but what worries me is how much – or how little – of this work is focused on clear objectives using systematic data collection methods. For some, I’m concerned the most valuable evidence PPI generates is the occasional lightbulb moment or, failing that, the pictures of engagement events that are posted to social media to show others we’re listening. This type of PPI might feel valuable at the time. After all, hearing people’s stories is emotionally rewarding and most of us come away feeling good. But we shouldn’t conflate this good feeling with value – six months later, we’ll probably find this engagement hasn’t led to any meaningful actions. 

Putting PPI to good use is fundamental to designing services that work for patients and the public. Asking the public to freely give their time and energy to inform our changes, but then failing to create a process where this information is meaningfully used, is unethical and only serves to diminish the perceived value of PPI. Good PPI should always go further and start with a question other than ‘Isn’t it about time we did some PPI?’. 

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Robert Varnam

Director of General Practice Development,
NHS England
Comment date
29 November 2018

Thanks for this great challenge, Rich. Designing for impactful patient and public involvement is definitely about more than just hoping for single lightbulb moments. The more longterm and systematic approach also helps us move from "involvement" to "partnership". That's going to be essential as we seek to catalyse movements of change in our communities - for example, to reduce risk factors like raised blood pressure.

Partnerships like that have to be a matter of culture, new relationships and systems - and a shift of power.

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