Patient involvement: moving beyond a tick box exercise

We are busy introducing an innovative way in which we can involve our patients so that it is no longer seen as ‘ticking a box’.

You’re at work and someone reminds you about the dreaded equality and diversity assessment or form you need to complete, just feels like another tick box exercise that appears to have little or no value (although this isn’t the case). Well in our field of communications and engagement, and in particular the latter, we sometimes feel that colleagues feel the same when we utter the words patient involvement.

Now there’s nothing wrong with patient surveys, questionnaires and focus groups in fact they’re vital to the work we do. No industry would be able to operate without market insight and patient involvement is just that for the NHS.

That is why we feel we need to look at actively involving patients but also looking at how we can work in partnership with and use patient/people/consumer power to truly shape services (which is called product development and testing in the commercial world).

We are lucky to have patients, carers, clinicians and other stakeholders who are willing to give up some of their valuable time to feedback their thoughts on current services or proposed future services. But how can we harness some of this collective will from those who feel they could offer more to the NHS and for free!

We’re not saying we have the answer however we weren’t going to sit still and wait for someone to advise us of an alternative.

That’s why we have developed a programme called patient leaders. Or we are calling it patient leaders for now however feedback has already suggested that a small number of patients themselves don’t feel this is the right title. They’ve said leaders suggests something they’re not maybe patient representatives would be better? For the purpose of this piece we will call it the patient leader programme but like any other product our customers will help us define the name (brand).

The patient leader programme is about more than just a one-way conversation as so often is the case with traditional models of involvement. We want patient leaders to sit throughout the whole commissioning cycle; to challenge us, to improve the way we consider patients at all stages of the commissioning cycle and to feel like the NHS really is OUR NHS. The role of patient leaders is to champion the wider patient voice using feedback from the wider public in engagements and patient experience

How have we been doing this? Well last year for the first time ever, certainly for our CCG, we asked a patient to sit on the procurement panel for a new service we were developing called the Patient Empowerment Project.

This meant that the contract awarded was only done so after all members of the steering group made up of healthcare professionals NHS managers and our patient leader agreed on the proposal they felt most closely matched our requirements.

We currently have 35 patient leaders of which 16 are actively sitting on steering groups for a range of projects. This includes the chronic pain group, childhood asthma, end of life care and so many more. For the first quarter of this year (January to March) our patient leaders collectively volunteered a whopping 260 hours of their time.

We are keen that patients get a chance to develop personally, we don’t want to simply take their time and give nothing back. So we hold regular peer support meetings and are also developing a training programme so that our patients are equipped to positively challenge us as we make decisions that affect people across all our communities. Our patient leaders have also had the chance to attend regional and international events.

Here’s what one of our patient leaders, Sue Watson has to say about her role: “As a patient leader it is my job to be objective and make sure that feedback from patients, carers and the public is considered by the group.”

Our programme is still under development and we know we will hit bumps in the road but at the same time we are confident that we have a model that could work across the city. These are early days but we are excited about the future of the patient leader initiative thanks to the passion of those who are making it the fabulous resource that it is – our patients.

We still want to hear from all our patients, carers and the wider public as well as health and care professionals. So do keep filling in surveys, questionnaires and get in touch with us in any other way you want such as through Twitter or Facebook. Our patient leaders will help champion your views and thoughts so that they are taken into account when we make decisions on planning and funding services.

If you have any comments about our blog or would like to get in touch to discuss the patient leader programme please email us:

We can tick a box too now, we promised to write a blog about the programme. Now where did we put the equality and diversity form…

Chris Bridle and Shak Rafiq

Communications and engagement leads, NHS Leeds West Clinical Commissioning Group