Do you want to have some form of INFLUENCE and inquisitive about how to make a difference?
(Please note that this is a tour of places you might not have visited so click on the highlighted text to explore what already exists!)
Influence is, for me, about having a say rather than giving your account. It is about creating a dialogue, enabling shared decision-making, and shaping the activity, landscape and culture of health and research.
Did you know that you can start by asking a question of research?
I have been particularly struck, over the past few years, by a number of individuals who are making a far greater difference to health and research than many of us who have been for years 'actively involved'.
These individuals wanted to make a difference, to find out about what research exists, where to go and how to influence policies and procedures that would bring about an improvement in their lives and that of others. They did not want to be 'actively involved' by sitting on a committee to comment on papers, take part in a workshop, become a member of a national group. They wanted change and they want it rapidly.
What strikes me about these individuals and other similar patient leaders in research is their passion, drive and ambition to improve the health of others and disrupt the cosy normality if necessary!
If we really want to change things then perhaps we need to be thinking differently, watching and reading about improvements are made in other spheres and contexts. Sally Crowe, from Crowe Associates, kindly suggested a couple of extra trips on the tour to learn about how 'culture eats strategy for breakfast' and something called the five steps to gtd.
Secondly, if we want real change we must make more of an effort to align care, treatment and research together. Too much 'active involvement' in research has just created a separate silo of patients in research.
Recently, I blogged about a great example from the Diabetes UK Care, Connect, Campaign initiative where research becomes part and parcel of the patient pathway.
And, you may ask, why does all this matter? Understanding patient experience and testing treatments through high quality research is what makes a difference.
I have become very impressed by the way in which rarer diseases have more quickly realised what they have in common and banded together to identify issues in on which they can make a difference.
The fortitude of these groups is the backbone of a 'Patients Academy' organisation called EUPATI. They tweet, use Facebook about issues I want and perhaps need to know about rather than another publication about involvement.
Whether for HELPING, INFLUENCING and/or GIVING @superporan reminded me that we need clear channels of communication, a road map and clear signposting of how to help and where to go.
If we want to influence research then we need to identify the areas we want to change and set out how the public can make a significant impact to improve their health and well-being - care, diagnosis, treatment and services.
There are also people working in health and research who also struggle to make a difference and we need to find more issues where we could be working together. Alice Stewart, (no relation), is a great example.
ATTITUDE and CULTURE - Improvements have been made but by far the greatest problem is the still related to the behaviour of research which does not always believe that the patient of the public has a right to a voice. Seeking the views of the patient and public remains an afterthought in too many cases and even when it is given a hearing little actually changes.
OWNERSHIP and RELEVANCE - The has been a shift with the greater involvement of the public but the majority of research is still conducted via the academic environment based on what researchers think is important rather than what might be wanted and needed. It is after all public money.
QUESTIONS and ANSWERS - We have many good examples of where the public have improved the appropriateness of the research question, inclusion and exclusion criteria as well as the outcome measures against actual patient/carer experience and public expectation. There is however still a need to include the public especially at the beginning and the end of research.
ISSUES and CONCERNS - Iain Chalmers and Paul Glasziou have provided us with a number of areas in which there is waste in research but what is the NIHR response? How do people find out about and get information about studies they can take part in? Who is doing something about co-morbities and the effects of multiple treatments for different conditions?
COORDINATION and COLLABORATION - How can we bring NIHR, NHS and the public together. How is it getting NIHR to work as ONE organisation? How will working together make a difference to the boundaries we are seeking to break? How can we avoid duplication and demonstrate value for money?
I got started and enthused through a course called Building Research Partnerships which brings together the public and researchers to share ideas, find out a little bit more about each other and begin to plan some activities. The course was started in cancer by Macmillan Cancer Support and there are now very many others.
Remember, 'You don't have to be a person of influence to be influential. In fact the most influential people in my life are probably not aware of the things they have taught me.' Scott Adams, creator of Dilbert