The Value of Working Together

What is the VALUE of us working together to improve research for better treatment, care and services?

On Monday, 9th December, I helped facilitate an event in Manchester that set out to explore The Value of Working Together in Research. Hosted by North West People in Research Forum http://www.northwestpeopleinresearchforum.org the participants came from a broad spectrum of community voluntary groups, Local Healthwatch, NHS as well as the more usual patients/service users, carers and researchers. Twitter feed was #TVWT @nwpirf

The event was organised by Bela Starling, Irene McGill, Melanie Chapman and Joanne Simpson. 

I was struck by how different people had viewed the word VALUE. Bela and I wondered at one point whether VALUE was too vague yet we immediately agreed that it allowed for a much wider interpretation and exploration.

Dr Katherine Froggart, Senior Lecturer at the Faculty of Health at Lancaster University talked about relationships, the working with and using an action research approach to involvement, a community conversation and invited us to look to the future with research that looks at the whole person and their wider needs from their perspective.

Katherine stressed the importance of addressing practical worthwhile research, is done in a participatory way and that it is part of a continual responsive process.

Prof Ann Jacoby, Professor of Public Health and Policy, University of Liverpool talked about the PiiAF http://piiaf.org.uk  and having an ethical approach - the right to be involved (normative), the improvement for research (substantive) and the values around involvement (process).

Prof Carrol Gamble, Professor of Medical Statistics, University of Liverpool talked about how involvement is valued by Chief Investigators and Representatives of public and patients and that the incorporation of patients, carers and public should always be in research proposals.

Dr Philip Bell, lay representative, was interviewed by Bela Starling, spoke about his experiences of being on a variety of groups and committees and the importance of paying travel and other expenses as an absolute mimimum.

MY OWN THOUGHTS

As the day progressed and since I have begun to identify three broad strands that I heard about the term VALUE. The first was the was that of our 'morals' - our attitude to each other and the manner in which we work. The second centred around the 'benefit' - the impact and gain for each other. The third, I believe was about  'worth' - the value we place on recognising people's contribution. 

MORALS - i.e. the way we conduct ourselves when working together was raised by a number of speakers and in feedback. The importance of openness from both patients/public and from researchers. 

One of the main reasons for involvement is to let in fresh air and to have perspectives based on experiences and different knowledge. It is our morals that will help improve the culture and climate towards better person-centred research based on actual experience with the aim of better diagnosis, treatment and care. 

BENEFITS - i.e. the difference that has been made through involvement.  An increasing amount is written about the impact of involvement on the ideas, design and delivery of research yet less information is gathered on the positive difference to our lives. 

It is highly unlikely that I would have taken on any of the roles and positions I have held unless I had become involved in research as a patient. Similarly I have not been to see my doctor for over 8 years as I have more of a sense of my own health and well being.

This years NIHR Annual Report quotes Chris Peters, a trial participant, "Research and becoming actively in research, has changed the way I manage my condition and has led to me being more fit and healthy”. iewer.zmags.com/publication/26f799ac#/26f799ac/18 

There are therefore benefits for us as people in learning more about our illness and our general well being. Additionally we are gaining new information and developing different skills. 

Have researchers had similar experiences of benefitting personally from actively involving people?

WORTH - i.e. the recognition of people for their efforts. First and foremost a simple thanks, a card, a letter expressing gratitude. Payment of travel and any out of pocket expenses in cash is a strong favourite. A cup of tea and some biscuits can be helpful. Each is a simple acknowledgement of the contribution being offered. 

Better still is a regular update of progress outlining what happened as a result of being involved and how that made a difference to the research. 

The cost of involving people in any further activities can be worked out using the excellent Cost Calculator produced by the Mental Health Research Network and INVOLVE can be found at http://www.invo.org.uk/resource-centre/involvement-cost-calculator/

The general altruism of the public knows virtually no bounds as is evident in the 637,976 people who took part in NIHR approved studies last year. However people have a right to know what happened as a result of their participation in research. 

In the Final Report of the EFGCP Multi-Stakeholder Roundtable Meeting on “Sharing Clinical Trial Data in the Interest of Patients and Research”, participant Ingrid Klingmann said:

"We have to do more to get back to individual patients invoked in clinical trials, we owe that to patients for their willingness to contribute to the trial. At present the concept is not embedded in the proposal regulation - but as a fundamental right it should be."

MY TWEETS on the DAY

Here are the Tweets that I posted about VALUE and on reflection I now feel that I could have batched them more effectively into the headings I have since identified. This has been an interesting experiment of comparing the difference between my tweets during an event and the potentially more thoughtful reflection.

I was tweeting my views rather than necessarily reflecting the day.

My ten tweets, on the day, were WORKING TOGETHER in RESEARCH should aim to have these VALUES...

1. OPENNESS to different perspectives and alternate ways of working 

2. PRESENCE at meetings, events and conferences of the people for whom the research is intended

3. RESPECTING each other's views and opinions even when we disagree with each other 

4. LISTENING to each other's needs and working together to address them

5. LEARNING from each other's experience, knowledge and skills to develop better solutions

6. DIVERSITY to ensure that research meets the actual needs of those intended to benefit

7. EQUALITY to ensure that as many people as possible get the opportunity to take part in research studies

8. MUTUALITY as a set of common goals to improve research ideas, design, delivery, dissemination and application

9. CHOICE to take part in research studies and get actively involved 

10. IMPROVEMENT in treatments, care and services for people's health and wellbeing 

RUNNING & the ART of INVOLVEMENT in RESEARCH

Running and the art of active involvement in NHS research

SOME BASIC QUESTIONS 

How do you get involved in something you have never done before? Where do you start? What do you need? How do you get help? How do you keep going in the face of adversity? How will you know if any good has come of it?

Taking up Running

These questions were just some of the myriad thoughts that swirled in my head when I began to contemplate taking up running as a hobby. This article is my attempt to reflect on the many similarities and differences between running and the art of active involvement in NHS research. I specifically use the word 'art' for involvement as it too often seems to require specific experience, specialist skills and abilities. Whereas with my running, there is little artistry about it and no previous experience is necessary.

I began my thoughts about running by considering the personal barriers that might stop me.

Maybe I am too old? I have never run anywhere in my 60+ years. Was running something I really wanted to do? I have never been a sporty or active person. Perhaps I am too set in my ways? I garden and have put on my boots for occasional wanders in the countryside but these have been the sum total of my physical activity. 

Getting involved in Research?

I had the similar questioning thoughts when I first became actively involved in clinical research. I was never very good at science, I didn't know anything about research. What was it about? Would I be listened to? Would it make any difference? What might researchers think?

There is however a major difference between these two activities. If I put 'running' into a website I can get information, advice and support that is clear, understandable and accessible - even from the NHS. If I type 'research' I am overwhelmed with mainly academic references, a perplexing landscape and a lack of information, advice, support - even from the NHS. This is as equally confusing should I want to take part in a research study or become actively get involved with researchers.

Running offers me clear choices. Research still leaves me confused at times (Sadly, I DO know my way around the research world but when you try to help others you see too many of their eyes glaze over!)

Taking up the Challenge

I have come to realise that taking up new challenges is good for you and good for the activity with which you choose to get involved. Without people taking part in research studies there would be very little research. Without involving patients much of the research would miss the point of improving patient outcomes and getting more realistic end points. 

The challenge I am contemplating is to tun a series of 5k races in 2015 to mark the twentieth anniversary of the diagnosis of my cancer. I have become so much more healthy since I have taken up running especially as I broadening my understanding of diet, other training needs and better equipment.

Our health and well-being are generally enhanced by being actively involved. We learn, we meet others, we develop new competences whether it is in pursuit of physical activity or seeking to help NHS research. Some of these are transferable skills others are new and developing competences.

A QUICK HEALTH CHECK

I run, yet I wouldn't call myself a 'runner'. I am actively involved in research yet I would never call myself a 'researcher'. I have now run my first 5k and came in the very respectful last place and felt as if I had won a gold medal. I have been actively involved in research for over thirteen years and am pleased with the progress yet taking up running has made me think more about how we help others to be part of our community.

It is not necessarily about great discovery in science nor is it about achieving great times and breaking records. It is about incremental improvements. It is about making practical changes to research and in my health. It is about getting actively involved, being part of a community, gaining a broader understanding, recognising the benefits of participation.

INFORMATION & SUPPORT 

For both active involvement in research and active running it is about making sure people have the right support, in the right way and at the right time to enable and empower them to take part. 

If I type 'running' into a general search engine then I get to look at a variety of sites, clubs, clothes and shoes. I can choose which those that best suit my needs and what I want to do. There are Apps for my phone that put me in control and maintain my own personal records of progress.

Where are the Apps for Research? Why do I have to wait for months to take part in a course or an event to find out what it is all about?

There is an even a stronger correlation between running and the NHS. 

The running programme I choose is called From Couch to 5K http://www.nhs.uk/livewell/c25K/Pages/couch-to-5k.aspx  It is actually available on the NHS Choices website and offers 6 programmes to help you take up running. Furthermore I can watch videos to help with Flex and Strength and download further advice. 

I wish something similar would help me participate and get involved with research but if I type in 'research' in the Choices website it is not as simple. 

AWARENESS & ACCESS

But first and foremost you have to know that you can get involved. The NHS Choices website is a good front door but it was a colleague, Jamie Spencer, who pointed me to the NHS Couch to 5k programme and the other apps that allow me to keep track of my fitness schedule.

Word of mouth, someone pointing you in the right direction, is crucial.

It is not one or the other - it is both. Unfortunately getting involved in research almost entirely reliant on people telling you about it unless you have a particular disease / condition or know about some of the many acronym organisations in a local area - so try out AHSN or CLAHRC for a starter.

Running is universal. I am not divided up into a runner over the age of 60 or someone who has had cancer until I choose to record that information for a race. Running is running. Involvement is involvement.

LEARNING & DEVELOPING

The NHS choices website also has advice and information about running better. It recommends other Apps to help. I use Endomundo as it uses satellite tracking to record my runs, has a diary where I can note my progress.

I have now joined my local authority run gym where after a short introductory session I am free to choose which equipment I 

So, where are the Smart Apps that support my involvement? Where is the website that allows me to keep track of my active involvement in research?

SUMMARY

Running  clearly illustrates how people can be given information, helped to become active, supported in the way they run without having to join a group, a club or a committee. It is about using IT to support people and give them choices.

I am fitter and healthier although sometimes a little out of breath.

A MOVEMENT for CHANGE?

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. 

WHAT'S IT LIKE TO TAKE PART IN RESEARCH?

I must declare that I work one day a week for the National Institute for Health Research – Clinical Research Network. This is, therefore, as much a memo to myself as it is a plea to others.

Is taking part in a research study a good experience?

Would you do it again? Would you recommend it to others? Did you know that you can help to inform and shape what research is about? Would you like to know what happens to the research that you helped as a participant? Would you be keen to know more?

It seems particularly odd that, despite all the excellent work to help make research studies and clinical trials a standard part of NHS services, treatment and care, we don't know the answers to these simple questions. The reason is that mainly we don’t ask.

More people than ever are given and opportunity to take part in research trials and other studies. Much work has taken place to involve the public to help focus on issues that are important to patients and their carers. This involvement has helped improve the questions being asked, the design and delivery of research studies. 

There have been significant improvements in the length of time it takes to get a research study up and running through the NIHR Clinical Research Network. This will lead to the findings being applied to improve people's experience of care.

Last year over 600,000 people took part in NIHR studies and yet we don't routinely ask them about the experience. There are some examples of questionnaires and surveys by individual facilities, Trusts or by particular researchers but we don't universally gather people’s opinion, their views or perspectives about research. 

Such basic questions. Such a simple thing to do. Such a basic courtesy to those who have given their time and effort involving additional consultations and procedures, additional visits to clinics.

The recent publication of the results of the Friends and Family test is a good example of the NHS seeking to ensure that the voices of patient, carers and family are listened to and used to effect improvements in services, treatment and care. 
http://www.england.nhs.uk/statistics/statistical-work-areas/friends-and-family-test/friends-and-family-test-data/

But...what about research?

Patients and their carers agree to take part in research for a number of reasons. We do so willingly with a general altruism and perhaps a modicum of hope. We accept that taking part often involves further tests and checks. Most of us do not seek reward. Acknowledgement, a thank you and an update of what happened to the study is always appreciated.

Gaining ‘customer’ feedback is increasingly part of our everyday lives from shopping on Amazon to travel and holidays. Tim Kelsey wrote recently on Why NHS England is launching 'TripAdvisor' for patients via @Telegraph http://fw.to/Ao6wNxK Why not a ResearchAdvisor?

Sadly, I still here the words 'research subjects' as if we are merely an extension of animal testing - fodder to be experimented upon rather than human beings. It remains ‘us’ and ‘them’.

If we are to genuinely make research part and parcel of the patient and service user pathway then we need to address this fundamental relationship. Seeking and analysing the opinions of clients will help create a step change in the way research is delivered. Anecdotally, I suspect that we will gain a huge amount of appreciative positive feedback but we will also hear where we can make improvements.

The best way to ensure that the feedback we receive is relevant and of value is to actively involve patients, service users, carers and the public in the thinking, planning, design and application.

The people who use our services will help us ask the right question in the right place and at the right time.

The Mystery Shopper campaign was a great start at understanding what people can find out about research in their local area. It also worked because it used local people to go in and ask the questions.

But most importantly it is changing the relationship. It is patients leading the way. Patients as Leaders in Research – so how can we help develop more people asking questions?

I have begun MY list of questions that I would like to see asked. What are yours?


1. Were you given any information about research studies and clinical trials at the hospital, clinic or practice relevant to your needs? (addressing ACCESS to Research)

2. Were you given information about having a say in research - getting actively involved to help inform, form and influence the research agenda? (addressing ACTIVE INVOLVEMENT with Research)

3. Were you given information about keeping in touch with the actual study or research in general? (addressing ENGAGEMENT for Research)


4. If you were given information or spoken to about research (addressing SATISFACTION about Research experience)....

Were you spoken to with respect and dignity?

Did you have enough information to make an informed choice?

Did it involve any additional appointments? We're these inconvenient?

Are there any comments you would like to add?

Would you be willing to take part in further studies?

Was it an experience you would do again?

Would you recommend taking part in research to others?

This should be finished with a thank you for taking part in research and for completing the survey.

Taken up Running

I have been strangely quiet over the past few weeks. I have simply been it of breath. 

I have been trying a different diet and thought that it might be good to get slightly fitter as well. I started running and it was agony to begin with but over the past seven weeks I have gradually improved. 

I have been using The Couch to 5K programme that can be found on the NHS Choices website. I can say that it really works: http://www.nhs.uk/livewell/c25k/Pages/couch-to-5k.aspx

Last night I entered a 5K race and completed it in under 40 minutes.

I helped to raise the profile of the Throat Cancer Foundation http://www.throatcancerfoundation.org

I didn't seek any sponsorship this time as I wanted to know that I could complete the programme but have agreed to send £50 to TCF.

The race was organised by http://www.nice-work.org.uk and the results will be on their website.

So, what has this to do with Making a Difference apart from being healthier, fitter and thinner?

Open Access

Extract from the MRC Policy Watch 29th July 2013

A memo has been leaked to The Guardian newspaper which reveals that two pharmaceutical trade bodies planned to secure the support of patient groups in an attempt to resist calls for greater transparency of clinical trial data (BMJ, 27 July). The memo came from the European Federation of Pharmaceutical Industries and Associations, and Pharmaceutical Research and Manufacturers of America.

An open letter to The Guardian, supported by more than 80 signatories, claims that large numbers of life scientists cherry-pick data, hide null results, fail to employ adequate statistical power and reinvent the aims of studies after they have been completed to make it look as though unexpected findings were predicted (THE, 25 July). The letter claims that pre-registration — journals accepting future papers based on the design of experiments rather than results — would reduce these malpractices because incentives to make papers more publishable would be substantially reduced.

Research for all

Is Research for everyone? Does everyone get the opportunity to take part?

The Stroke Clinical Research Network in conjunction with the Stroke Association have produced a fantastic booklet for people affected by aphasia.

You can read a great blog about this from the Association of Medical Research Charities - http://policyblog.amrc.org.uk/2013/07/15/talking-to-everyone-about-clinical-research/

Well done to everyone involved.

Update of Involvement in the NIHR Clinical Research Network

Last week we had a meeting in Leeds of patients, carers and service users  from across the National Institute for Health Research.

As part of the event I wrote the following letter of how in the past year we have already seen some significant developments in patient participation, involvement and engagement in research.  So this seemed a good opportunity for a quick update!

Back in January, the NIHR Clinical Research Network published the results of its “mystery shopper” initiative – where patient research activists revealed how well local hospitals were promoting clinical research opportunities.  The report on this initiative went all the way up to Ministerial level and many NHS Trusts are starting to do more to promote research as a direct result of the findings.  A real case of “patient power” driving changes.

On International Clinical Trials Day in May, the NIHR launched “It’s OK to Ask” – a campaign to encourage patients to ask their doctors and consultants about local clinical research opportunities, and help the clinical audience to answer these questions.  NHS Trusts across the country held events to promote clinical research and thousands of leaflets were distributed, helping to raise awareness of the important role research plays in improving treatments for patients, and the need to treat patients as partners in research.  The campaign got some great local media coverage, and was also a hit on social media, with around 500 tweets using the campaign hashtag.  One exciting feature of the campaign was the way that patients got directly involved as local ambassadors, press spokespeople and social media supporters.  Thank you to everyone who took part in this way – you really helped the campaign to make its mark.

Many of you will remember the work we did together on “The Way Forward” report back in 2010.  This set out an ambition for the NIHR Clinical Research Network to move towards a phase “where the involvement of patients, carers and the public becomes more focused on improving research and its delivery, and leads to impacts that relate directly to Network responsibilities for delivering research relevant to NHS patients…”

With that in mind, I am sure you will be very interested in the NIHR Clinical Research Network’s Transition Programme.  Through this Programme, the Network will be moving to a clearer structure with 15 Local Clinical Research Networks, each supporting clinical research delivery across all disease areas.  A new contract is being drafted, which will set out the responsibilities for these local Networks, and you will be pleased to know that patient and public involvement and engagement features more strongly in these responsibilities than it has before.  In fact, the Transition Programme offers great potential for patients, carers and service users to become even more engaged on activities relating to research delivery.

It is also heartening that PPIE has being “built in” to the Transition Programme at all levels.  I am part of the overall Transition Programme Board, and Karen Inns is leading a piece of work to shape PPIE in the new structure.  Each Network PPIE lead is linked into one of the various working groups for the Transition, so have a fantastic opportunity to make sure that the patient agenda is part of every decision, and that patient views shape these important changes.

This is only a short snapshot, but I am sure that when we meet at our event in June, we will hear of many more inspiring initiatives led by/involving our patient, carer and service-user community – and think up many new ways to continue to build our community and strengthen our voice.

I look forward to working with you again in June and for those using Twitter - #WITR

RESOURCES AND LINKS

If you’re interested in some of the things I mentioned in my letter, you may want to check out these web links, where you can find more information.

I have also added a few additional links in too that relate to the patient participation, involvement and engagement agenda more generally:

Mystery shopper

www.crncc.nihr.ac.uk/mysteryshopperreport

Based on the work of patient “mystery shoppers”, this report shows that NHS Trusts could do more to promote clinical research opportunities to patients.  It also contains some useful statistics about patient attitudes towards clinical research.

http://www.crncc.nihr.ac.uk/resources/Reference+documents+and+reports

Still related to the mystery shopper, this page links to the questionnaire that patients used, and to a useful leaflet called “We do clinical research” which lists the various patient-facing NIHR leaflets about clinical research.  It is aimed at Trusts and professionals who recruit patients into trials, but may also be of interest to anyone involved in the research agenda.

OK to Ask

www.crncc.nihr.ac.uk/oktoask

This is the homepage for the campaign website.

http://www.crncc.nihr.ac.uk/oktoask/get_involved.htm

A good fun page with pictures of patients, researchers, NHS professionals and many others who sent in a picture to show their support for giving patients a stronger voice through the OK to Ask campaign.

Transition Programme

www.crncc.nihr.ac.uk/transition

This is the page on the NIHR Clinical Research Network that provides basic information about the Transition Programme.

It also contains an email address that you can use if you have any specific questions about the Programme.