Taking the temperature of involving patients, carers and the public inResearch

This article follows on from my previous blog on The Pulse of Research and asks about the temperature of involving the public in research. 

As a child, when my temperature was taken, I was ordered to open my mouth, whilst the nurse or doctor took a glass thermometer, shook it vigorously then placed it under my tongue. 

The health professionals knew everything and my role was to listen and to be told. 

Nowadays, I have an App and can place my own finger tip against the camera lens of my phone and receive the same information along with related health advice. Ownership, responsibility and control have shifted. 

In the world of involving the public in research our temperature check is for the most part restricted to checking the existence of a thermometer (the NIHR expectation of involving public) and asking whether the temperature has been taken (in the IRAS form).

We tend to forget the purpose of the thermometer is to give us information about the patient's temperature. We do this to help understand what might be wrong AND what might be done about it.

We all want research to be as fit as possible for purpose and as relevant to the needs of the NHS population. We need the thermometer to provide us with information.

We have, perhaps rightly, spent a lot of time promoting the use of thermometers, establishing thermometer policies and training people in their use. The danger is that this has been at the expense of the purpose and value of taking a person's temperature. 

We may, in the coming months, also run the risk of keeping the practice of glass thermometers. We constantly need to be moving with the times in the use of technology and in the way we empower individuals to make a difference to the life and body of research. 

So, what should we ask, as patients, Funding Bodies and Ethics Committees, to verify that the temperature of the research has the pulse of the patient, the touch of the carer and a quality of life?

It is certainly NOT just - "Is there a thermometer?" 

A thermometer is a tool, an instrument that offers an opportunity for diagnostic and advice purposes. Involving the public has a similar role and process. 

Our diagnosis should ask...

Is the patient and public involvement is authentic, appropriate and proportionate? Are we able to read and observe that the study is:

• patient centred and of benefit
• refers to incidence and need
• has a readable and understandable lay summary

Our questions should elicit the actions have the researchers taken to:

• Speak beforehand to patients or the public about their research
• Involve a couple of patients on their steering group or consult a patient reference group
• Name actual individuals 
• Draft a plan for involvement

We should be keen to see evidence of what has happened as a result of these actions:

• Has the thinking, the question, approach been adapted as a result?
• Has the question, the measures of inclusion or outcome, the information leaflets been altered?
• What improvements have been made to the proposal application and lay summary?
• Has a plan for involving patients, carers and the public been developed together?

We should be looking for a realistic, manageable and effective plan for involving public for the lifespan of study.

• It can be varied, creative and of mutual benefit
• It should be meaningful and purposeful
• It ought to be properly costed to include the payment of expenses, travel, honoraria if appropriate and meeting rooms. 
• It does not have to be two people on a committee. It does not have to be the same people throughout. 

The thermometer is only a guide so we must look across the whole application to see the general signs of involving the public. 

As I have read more and more research proposals I am pleased by the improvements in the writing of the section on 'patient and public involvement' but these have no value whatsoever if it becomes clear that the whole proposal has not been read and commented on by patients, carers and the public. 

The essential elements of any diagnostic are the advice and the necessity for any subsequent procedures and regular check ups. 

These are the only way to ensure quality of life and we don't really do either in patient, carer and public involvement. 

It is no longer acceptable to say that there has been some involvement or that it is intended. We must focus more directly on it having a direct purpose and the resulting actions.

From personal experience to a big conversation

The photograph of that car submerged under water during the recent floods on the Somerset Levels captures much of what it feels like to be diagnosed with a life threatening illness. 

You are driving along on a reasonably straight road and then our life course changes. There is the shock and surprise even when you think back that the rain was heavier than usual. 

Another part of your brain is wishing you had learned to swim before this happened. 

It is clear that the landscape has changed and the challenge is what you do about it? Do you give up? Do you take up the challenge? Do you join others to help, support, improve or inform and influence policy and practice?

SarcomeUK - http://www.sarcoma.org.uk/voices have their Annual Conference in Birmingham today and have kindly invited me to talk and run a workshop. 

One of the greatest challenges is that just as we try to cope with the changes happening to us is that everything else is changing round about us. 

The NHS landscape is altering beyond all recognition.  The S in NHS being described as SYSTEM more than Service. The rise, in England, of Clinical Commissioning Groups, Clinical Senates and Networks, Health and Wellbeing boards as well as Healthwatch could make us give up and remain at home. 

Don't. Get out there and ask questions. Although the names and acronyms  change the purposes remain the same throughout the UK. 

Someone sets the overall policy - Government and NHS

Someone gathers information locally - Strategic planners

Someone holds and spends the money - Commissioners

Someone uses the money to driver the services - Providers

Someone keeps an eye on what goes on - Community Voice

Someone  checks - Inspectors

By all means learn the names of the organisation but it is better to start by thinking about what happened to you and what you want to achieve?

What happened to make you want to get involved?

Is there something specific you want to change?

What might you need to know before starting?

Who could you speak with to help you in your task?

How can you plan to effect change?

We can all, individually, make a difference but one the special features of SarcomaUK is the ability to bring together a community of patients, carers, supporters, friends with researchers, clinicians, nurses and care workers. 

What happened to us is important but it is not about our story. If we are to use our voices effectively it is the particular moments or events that matter. It is about whether these were in common to others or quite unique and inappropriate. 

Our voice is most effective when we...

Set aside our story

Ask what needs doing

Offer to help find a solution

Achieve something together

Tell others what we have done

This is not to devalue what happened to each of us. It is to celebrate and encapsulate our experiences. People do not need to hear everything that took place to understand our commitment, do not require the chronology of events to hear our passion. 

We can also bring knowledge and skills from our life experiences. 

We can help translate and interpret between the science and ordinary language. We can identify parallels to help people make sense. We can ask a question that allows meaning to take place.  

There are, of course, other changes that are taking place that further challenge us. Some however offer opportunities. 

The NHS research landscape is changing to a more local approach. From April 2014 we will see Local Clinical Research Networks forming part of one  Clinical Research Network (CRN) within the National Institute for Health Research (NIHR). This will mean that more patients will be given an opportunity to take part in research and more of the NHS being research active. 

It is increasingly likely that an NHS being research active means that patients have better outcomes. 

Changes are also taking place in the Welfare Landscape with reductions in funding. Rights that once were held dear are changing to duties and responsibilities. Legal Aid that once might have helped to redress an inequality has all but disappeared. The rhetoric has shifted from those like us in need to scroungers and layabouts. 

The demographic landscape of an ageing population is likely to place undeliverable demand on treatment, care and services. 

All of this is set against a backdrop of the economic landscape which hasn't offered any optimism. 

And yet I am not depressed. I am in fact rather hopeful because today's event shows how a patient led organisation can make a huge contribution in a relatively short time. 

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

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.

Challenging Expectations of Involvement in Research

Speaking today at Department of Health Sciences, University of York on the topic of challenging expectations of involvement in research. The following notes reflect the content of a number of my slides.


Involving the public in research can be challenging for the researcher, the public and the research itself. 

So, how do we ensure that involving the public is effective and has mutual value?  

The researcher may only want to tick the box, answer the PPI question or help get funding.

The public may want more research in one area, or get the latest information about upcoming studies, or just get better faster

Any meeting between the two may shift and alter the research but this should be to common goals...

• The best and most relevant question,
• Research that is patient centred throughout
• Reference to Incidence and need
• Clarity around the difference it is seeking to make
• Readable lay summaries
• Understandable information
• Appropriate and effective involvement
• A fully costed plan.
• and the answer to where the results will be reported

An agreement (less than half a page) should be sought between the researcher and the public which outlines the following...

Context - e.g. Type of research; part of research cycle; or research organisation

Purpose - e.g. To review a protocol; check the question; be on a study management group

Impact - e.g. To improve the language; to help with the inclusion/exclusion measures

Benefit - e.g. So what x 3 - to the Research; for the researcher; and for the lay person

I have now added some others

Expectations - e.g.Meeting expenses; support, learning and development

Review - e.g. To reflect and capture the impact/benefit

Publish - e.g To record any added value from involvement

The agreement should also state exactly what the research and public can expect from and of each other.

It is only by having such an agreement that we will meet our expectations of each other and make a difference.

There are, regrettably some myths of involving the public which need challenging.

PPI is NOT a distinct and separate activity, an additional burden. It is common sense, simple and should be the driver of the research

You do NOT need to have 2 people on a committee as there are many other effective ways of engaging and involving the public in research

A Reference Group is NOT essential as you could have a series of focus groups or adapt a local patient self-help group

Payment of honoraria is NOT mandatory. Many members of the public will willingly give up their time to help and support research especially at the early stages. IF however you are placing the person in a role on a committee, or as a research partner then payment should be considered.

You do NOT need to start afresh every time you do a new piece of research. You can call upon people who were involved before or just reference what they said

You do NOT need to use same people throughout. You can have a mixed economy of involvement: someone who advises, a focus group then reporting to a different patient community whilst maintaining some contact with then all through a newsletter update.

Involvement does NOT guarantee funding although if done well it might help

The Lancet and Department of Health jointly hosted a Symposium: The Lancet Series on Research: Increasing value, reducing waste

The Symposium was initiated by an article about the issues of increasing value and reducing waste in research by Iain Chalmers, Paul Glasziou et al., in 2009. The paper calculated waste as being as high, in some cases, as 85%.

.

The series of papers presented at the Symposium further developed this theme and responded to the following specific areas…

·       Questions relevant to users of research

·       Appropriate research design, conduct and analysis

·       Efficient research regulation and delivery

·       Accessible full research reports

·       Unbiased and usable reports

These issues should equally be of importance to patients, research participants, their families and the public. Each area will help find answers in a speedier, more efficient, appropriate and honest manner. This should subsequently lead to better advice, care, diagnosis, treatment and services.

These are the real challenges we must address whilst also helping researchers develop better research.

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