Academic Health Science Networks (AHSNs) have earned a reputation for successfully enabling innovations to be more widely adopted by our health and care system. However, less robust is the approach to incorporate valuable patient experience and insights to help more people achieve the added benefits of medicines, technologies, or interventions with proven effectiveness; particularly for those with greater needs.
At Yorkshire and Humber AHSN, we understand the value of patient engagement. Our Patient and Public Involvement and Engagement (PPIE) mission is to transform lives through innovation by enabling the public to be at the heart of all we do. There is statutory guidance for the NHS on how to work with communities effectively. It’s a priority within the NHS Long-Term Plan. Most importantly it’s the right thing to do and increasingly recognised as an opportunity to ensure services meet patient needs.
But let’s not forget that delivering effective PPIE isn’t easy. It requires resource, planning, time, and consideration. It costs money – and so it should. It needs willing community participation, trust, and importantly, patients need to understand the impact their involvement has. What it cannot and must not be is an afterthought, an add on nor a tick box exercise. To be purposeful and effective, it needs to be deeply rooted in health and care policy and become a golden thread in healthcare transformation, including digital.
So where am I going with this and what’s the purpose of this article?
In December 2022 we proudly won a commission on behalf of the Accelerated Access Collaborative (AAC) to develop a framework based on systematic gathering of patient experience and insights, where this knowledge and understanding will be woven into innovation uptake and adoption planning via an applied framework. Not only is this a fantastic opportunity to shine a light on the value of working with patients, but their trusted voices will shape an approach to ensure inclusivity at a time when health inequalities are in sharp focus. This is what we call proper PPIE!
Alice Williams, Head of Patient and Public Involvement, Innovation, Research and Life Sciences at NHS England said “I am so delighted that this work is coming together. We often routinely collect clinical and financial data when we think about drivers for innovation adoption and spread, but rich and valuable insight from patient experience data is often missed. Understanding how innovations are being experienced in the real world brings real opportunities to accelerate uptake. Patient experience insight enhances clinical and patient education resources, highlights significant gains to people’s quality of life and can drive up interest and patient activation levels to create a pull for the product. Importantly poor patient experiences can indicate significant challenges for widespread uptake. This work will develop an approach to systematically collect patient insights and use these to shape and accelerate adoption plans.”
The short project, due for completion in mid-April, is long overdue and something to be celebrated and understood. The team and I wanted to raise awareness and secure the interest of innovators, clinicians, and patients because ultimately, the imminent outcome will change, for the better, the deployment and adoption of innovation and its success.
Tracey Walker, Director of Delivery, Yorkshire and Humber AHSN said “We want to work with our Integrated Care Boards, patients and communities to improve equitable access, outcomes and experiences of care. By engaging people living with, or caring for others with health conditions, we access unique perspectives from lived experiences which can significantly improve existing services and seek new ways of working to best meet our patient and community needs. This framework will be a great opportunity to bring systems and people together to improve innovation uptake and outcomes for all.”
So, let’s rewind a little and look at how innovation is currently introduced into healthcare.
Innovations have frequently entered routine practice through two nationally supported and funded mechanisms. One is the MedTech Funding Mandate Policy (MTFM), launched in April 2021 which directs the NHS on effective and value for money innovations to contribute to the sustainability of the NHS and improve patient outcomes and experiences. Secondly, we have seen the Rapid Uptake Products (RUP) programme which has identified and supported products with NICE approval in line with the NHS Long Term Plan’s key clinical priorities, but have lower than expected uptake to date.
Now let’s consider what hinders the success of innovation roll-out. And believe me, it’s not rocket science. It’s often the most basic, obvious barriers which make it hard or impossible for our populations to understand, access and positively experience diagnosis and treatment. By understanding these from the outset when planning the scaling of an innovation, everyone wins. Patients, including our underserved communities can timely access diagnosis and suitable treatment, clinicians can do their jobs properly, innovators see their dreams become a reality and NHS England can begin to see a decline in waiting lists, a narrowing of health inequalities and an increase in inclusive healthcare access, experience and outcomes across our populations.
As Graham Prestwich, our Patient and Public Involvement and Engagement Lead, said in a 2022 blog “Patients’ experience of healthcare services is vital to better understand the impact of those services and what works well, what could be improved and what is important to the people who should always be central to all the activity and processes that go towards achieving good care”.
So where are we at with the project?
To begin, we carried out desktop research and utilised our trusted relationships with our Applied Research Collaboration (ARC) to secure them as our independent evaluation partner. Vishal Sharma, Associate Director at the Improvement Academy at Bradford Institute for Health Research, is providing external critique which will ensure our approach to the design of our activity and findings are robust.
Vishal said: “The project is a fantastic and long overdue opportunity to collect patient experience regarding the adoption and spread of healthcare innovations, and utilising this insight and knowledge to develop a gold standard for researchers, clinicians, commissioners, and others, in how the adoption of future healthcare innovations can be improved whilst keeping the patient at the heart of everything we do. This is particularly the case for those populations that are difficult to reach; by improving their ability to engage and their overall experience, we can take a positive step in reducing inequalities – both now and in the future”.
To ensure that this work is up to date and reflects the current and challenging healthcare environment, insights have been gathered from across five different innovations currently being adopted as part of the MTFM and RUP programme. This has been achieved by learning from patients, carers and families, and the various clinicians who have supported them. The five chosen products have provided us with valuable insight into understanding patient access, experience, and outcomes. On project completion, this will enable the AAC to truly understand patient perspective and insights and then incorporate this knowledge and understanding into plans that more effectively drive the adoption of innovations and accelerate uptake and spread.
The team have now concluded 29 semi-structured interviews with patients and carers, which is informing the development of the framework. Vishal will be providing an additional report on our adopted approach and a wider view of the findings and their implications, adding valuable additional independent oversight to our work.
We asked Andy Thorpe, Urology Consultant at Freeman Hospital (Newcastle Hospitals NHS Trust) and Getting It Right First Time (GIRFT) Clinical Lead for Urology in North East and Yorkshire and Humber, for his comments on involvement in our project steering group who said: “This steering group will provide a great opportunity for patients to become involved and give advice on how we can provide equitable access for patients within the Northeast and Yorkshire region to new technologies for the treatment of benign prostatic enlargement.”
We wanted to share with you this work ahead of project completion, inviting you to raise points of interest along the way. All AHSNs are supporting the project in some capacity, sharing valuable intelligence in relation to their local MTFM and RUP roll-out. What’s evident is whilst PPIE isn’t a consistent feature, there is an appetite amongst clinicians and patients to contribute to and support this exciting work.
Who better to advise us, and ultimately NHS England, on what needs to change, than the people and carers for whom services are designed to meet their many and varied additional and changing needs. We can learn valuable lessons from patient experience, and we envisage this project to be the start of something truly amazing which will undoubtedly lead to more effective and appropriate deployment of innovation, improved access, experience and ultimately, better patient outcomes, within the finite resources available.
For further information on the project, please reach out to email@example.com