Friday, 11 October 2013


In preparation for a talk at the Sarcoma Patients EuroNet (SPAEN) Conference I began thinking about what we as patients are trying to achieve to improve patient outcomes through our involvement in research in England.

A Movement for Change?

Simon Denegri, NIHR Director for Participation and Engagement in Research,  often mentions that we are a 'movement' helping to improve research. I talk about many of the different impacts that we have made, as patients, and refer to the 'changing culture and climate' taking place in research. 

But, what do we mean by these terms and what are we all trying to achieve?

Separate Silos or a Collective Voice?

It seems to me that we became actively involved to improve research and to move to a more collaborative approach in which patients would be viewed as partners.  Yet, subsequently we formed our own groups and created our own silos without any real clear set of common overarching aims. 

We become too defined and fixed by our condition, an organisation or by geographical locality. We argue the differences rather than the overall purpose.

A Common Purpose

I have begun to set out below some headings in BOLD that I believe are areas of common purpose that we should all be seeking to achieve as patients, carers and the public. Each heading is followed by an explanation of why I think it is important. 

Do you these headings provide us with common aims? Are there others? 

BETTER RESEARCH - The drive for more relevant and appropriate research based on patient experience that has patient benefit as a key outcome measure. This means working patients, carers and the public working together with researchers and those in the health services. Organisations such as the Research Design Service (RDS), the Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) and NIHR, Evaluation, Trials and Studies (NETS) are the natural places to inform and help shape research.

SIMPLER EFFECTIVE RESEARCH SYSTEMS - The push for less unnecessary bureaucracy and regulation that delays research. Regulation is clearly necessary but how can we make it better. The Health Research Authority (HRA) is keen to have your help and sets out their strategy here.

CLEARER ACCESS - The right to know about research studies that are relevant is outlined in the NHS Constitution. Mystery Shopper campaign, I4A and other patient surveys.

IMPROVED RECRUITMENT - Improved research delivery The NIHR Clinical Research Network is evolving to provide more local ownership to provide an even better infrastructure to allow research to happen in the NHS.

OPEN ACCESS - Too many patients say that they never hear what happened to the research. Interestingly Doctors are also concerned about not being able to read all the information discovered in research. Ben Goldacre’s article in the BMJ is worth reading.

SPEEDIER APPLICATION - There is little point in doing research that sits on a shelf somewhere. Research findings should be used to improve patient care. NHS England says that 'the NHS belongs to the people' so it will be interesting to see how they promote research.

BETTER PATIENT OUTCOMES - This is surely the main end point for all patients and carers. The main function of NHS Research has to focus on questions that improve treatments, services and care that makes a positive difference to people's lives. 

SATISFACTION - What do patients think about taking part in research. I asked this question in my last blog and you can read it here