Tuesday, 25 February 2014

En visning fra Danmark

En visning fra Danmark - a view from Denmark

I often receive invitations to speak at Conferences and very occasionally these are in other countries. 

Today it is Denmark. 

The Danish Government’s Department of Health visited the UK a couple of years ago to enquire about the active involvement of the public in research which resulted in Simon Denegri and I speaking at the launch of their Strategy. I also spoke to the Danish Cancer Society.

This current invitation came from Professor Kim Brixon, Head of the Institute of Health Research, Southern Denmark University, a member of the Danish Panel who visited INVOLVE  and a member of the planning group for this conference.
I initially assumed that it would be mainly about the research aspects of my work but what surprised and pleased me is that this event actually brings together so many parts of my career, interests and life.

The title of Narratives, Indicators and Concepts in Changing European Welfare Societies does not seem to do justice to the nature and content of these discussions and the research about real lives that will follow.

The themes are relevant and important: Life Course & Wellbeing, Democracy and Citizenship, State & Society.

My talk will obviously revolve around the course of our life's events and how that affects wellbeing. The odd fact is that I would not have involved in all of this without having had cancer. I am fitter, healthier and more interested in my well being. 
Involvement, particularly in research, has helped me understand more illness and what is being done to answer many of those questions that swill about our minds especially in the days before and after diagnosis. 
Opening the doors and windows of research will of course help individu studies but it is also about democracy and citizenship.
My previous life as a teacher working with challenging pupils was about helping them cope as citizens. It was about seeking to reintegrate them into schools following exclusion. 
One of my current roles is as Chair of Trustees for Nottingham and District Citizens Advice Bureau supporting people with problems of debt or welfare. 

My other role as Associate Director for Patient Involvement in Research is the real reason I am here but our life course gathers up all our experiences so I am looking forward to hearing the other contributers.

The National Institute for Health Research is a part of the NHS in England.  It is a public body that has set out to improve the whole of research infrastructure, faculty, research and systems - all for the benefit of patients and the public
Our life courses are affected by illness and disease as well as economic, social and employment prospects. Research plays a vital role in identifying and answering questions that can lead to improvements in our life.
In my talk I defined PARTICIPATION as that of taking part in studies INVOLVEMENT as actively shaping research with researchers and ENGAGEMENT being the wider contact and spreading the word about research. 
My focus is on the ACTIVE INVOLVEMENT that helps inform, form and influence research especially on issues that have mutual benefit.
The world of involvement is not perfect and there are many differing viewpoints, most of which are positive but some tokenism still exists. However there is now a great range of involvement from developing ideas to driving policy and helping with governance.
The need for an Agreement between researchers and the public is explored in an earlie entry in my blog http://bit.ly/NpaK8V
Nottingham Citizens Advice Bureau http://bit.ly/Npc3VcNIHR Annual Report Research, and becoming involved in research, has changed the way I manage my condition and has led to me more fit and healthy. Chris Peters, Research participant
The Good the Bad and the Ugly
Good Principled, Authentic and MutualBad - tokenism, tick box and No changeUgly - false, meaningless and manipulative
As It reflect on what makes for good and effective involvement I thinks the lessons are...Push and Pull - The Departmental 'pull' on putting it in policy documents and the 'push' from patient communities; Push from researchers and pull for patientsRules  - Clear Terms of Reference and agreement that make the role explicitCommitment - Enthusiasm from research leaders and patient representativesTime - A willingness to play the long game of working within the structuresRelationship - This is a developing community and sometimes we will disagree.
In the words of Rabbie Burns...Skuld gammel venskab rejn forgoTranslated by Jeppe Aakjaer

Wednesday, 19 February 2014

The Pulse of Research

Involvement is about the Pulse of Research

I have read many research proposals, applications and bids for funding over the past fifteen years. A few are very well written but many need a simple infusion of blood. Occasionally some applications are downright poor and require life-giving resucitation.

It seems, to me, as if the training that researchers receive is so rigorously rooted in objectivity and distance that the very essence and colour is often drained from the soul of research. Even contracts for research organisations suffer this same fate.

NHS research is more than testing whether A is better than B or that this contract is better than that. They are all ultimately about seeking to improve people's lives, treatment and care.   

They require a genuine sense of why it is being done and the nature of its value. To fully understand this value researchers and contract managers need to talk to those who will the longer term beneficiaries of their work.

Although researchers are increasingly involving patients, carers and the public in helping to improve research it can at times be restricted to offering advice on the lay summary, improving the patient information leaflets or merely commenting on the section on patient and public involvement.

My most frequent observation, when reading applications, is that I don't get a sense of the 'person'. The patient or service user is missing. 

I want some brief explanation of why it is important for patients: the numbers of people affected and the general need for this research. I would like a sense of the individual person and the potential value it might bring to their lives.

I would like to read about this in short sentences using paragraphs and headings rather than a single stream of text. I would prefer words that your non-research friends and relatives could understand. 

I would rather not have to have a medical dictionary to hand terms and have to spend time working out the various acronyms. I would like you to use a spell checker when there is clearly a line under the word and a calculator to work out the sums in the costings.

Involving people in research, at it's very best, brings a flush of life and can help pump blood through the whole body of the research. It can obviously help correct some errors but more importantly it can add value to the whole process.  It is an opportunity and not another chore. 

It offers the potential to significantly enrich the purpose of the research, set the appropriate tone and may provide a moral compass to ensure the research is done and applied.

It is the reminder that the person who is most likely to benefit is living and breathing. It is the pulse of research.