The importance of AHSNs
With the NHS seemingly spawning new organisations almost daily (not to mention acronyms), the innocent bystander can be forgiven for feeling bewildered by what it all means. But one particular ‘new kid on the block’ might make a bigger difference and impact on the lives of patients than all the others put together.
In fact, that’s not a bad way of looking at the future role and importance of Academic Health Sciences Networks (AHSNs) – bringing it all together. In an environment in which one of the greatest risks is fragmentation in how the NHS is set up locally and regionally, the building of new networks and partnerships is going to be vital. These cross-cutting organisations will be the new leaders in the system. Well that’s my theory anyway and I’m sticking to it.
You can find out a lot about AHSNs from looking at this website and the approach being taken in Greater Manchester. Others are being developed across England. In a nutshell they will bring together academia, NHS organisations, industry, charities and clinical research networks to support research in the NHS and ensure that new ideas are adopted in our hospitals and surgeries.
Patients as part of the AHSN partnership
But the question we need to be asking of all AHSNs is: where is the patient in all of this? More specifically, will patients be included as partners in the way they operate and what they do, or will they just be seen as the ‘subjects’ of their attention? Looking to the future I am prepared to make this wager with you: those AHSNs who see patients as part of their partnership, and from this very early point in their development, will be the ones that make the greatest headway with their local population in helping to deliver better outcomes for patients.
Public involvement in health research (in other words, how you and I are included in the way that research is devised and conducted) is fundamental to this ambition. That’s not just my view; it’s that of the National Institute for Health Research (NIHR) as well. Not only that but it’s a view based on a growing body of evidence which demonstrates the difference that patients can make to research. For a look at the evidence, I suggest you begin here.
When patients are given the time, support and avenues to share their experience and insights, the return on this investment is very real indeed. It can mean anything from making sure that the way a clinical trial is run is suited to how patients live with their condition, to communicating research in a way that actually makes people want to take part. In fact I would go so far as to say it can make or break some research. Organisationally it is also about helping leaders and their staff to be sure that what they are doing is attuned and accountable to the community they are serving. And that’s just plain good governance.
So I hope that those creating AHSNs spot the deliberate (?) mistake in the Department of Health ‘how to’ guidance. This talks about one of their missions being to increase patient engagement and participation in research. It is a noble aim and one I am sure we would all endorse. But it is far too narrow a definition of the relationship with patients and the public they should be looking to establish and its purpose. The real mission is about inviting patients to become members of the community and to work with them in making the collective enterprise a successful one.
Recently, I was fortunate to hear a good colleague of mine tell their story of public involvement. It is not specifically about research but it serves up a useful metaphor for conveying my message and which I hope will stay in your mind long after you read this.
The tale centred on her long battle with the local hospital to replace a torn chair in the phlebotomy department waiting area. This was not about improving the aesthetics of the room but about good hygiene. Particularly given the reasons she had cause to visit there regularly. Yet the cultural and organisational barriers to making such a simple change were many. The place simply was not set up to listen to such feedback. Only as a result of many months of dogged persistence did the chair get replaced. But it did, and this small victory had a not insignificant wider impact in that the hospital now makes clear to patients how they can raise such concerns. For me, the torn chair is a good symbol for what happens when patients are not central to the way a health organisation thinks and breathes.
Chair of INVOLVE and NIHR Director for Public Participation and Engagement in Research