Challenging the Status Quo

View from my room

I received an invite to speak at a European Masterclass in Cancer Patient Advocacy. I reflected on the history and gave a summary of some of the progress we have made. 

The following notes capture some of my thinking that I spoke about in my talk in Baveno, Italy.

The nature of involving patients, carers and the public is a growing movement. The seeds are fairly firmly planted in policy in England. To continue the metaphor there are many fine flower beds but there are some barren fields so there is much still to do.

One of the significant ways in which this has taken place is the establishment of groups and the promotion of representation on committees.

These groups have helped me and others to get a greater understanding of what research is all about and what is required. It has provided a sense of community and common purpose about improving research. The community has tended to be populated by white, middle class, semi-retired professional people - like myself.

Some of the groups have been state supported, funded by government bodies and assisted by managers and other staff. The way these groups function often mirror the administration of the organisations. Too often they are encombered with unnecessary levels of bureaucracy with extensive minutes and papers. 

These groups have made an important and valuable contribution impacting on policy and practice of research. There is certainly a place for groups to continue to be encouraged and helped progress. There is also a time to let go and encourage self sustainability.

The challenge for us all is how to reach out to others, to enable and empower individuals as well as communities of either interest or locality.

Do people need to become embroiled in committees and groups to be able to make a difference? 

I have selected some key themes (in CAPITALS) to explore some of the concepts that need wider discussion if we are to make best use of any resources especially in a time of austerity. I want to see active involvement at all levels of research but we have to consider what makes the best added value.

Is it better to have groups funded INSIDE the organisational structures of research or do groups on the OUTSIDE have the potential to be more effective?

Should we promote greater ADVOCACY, the speaking up and out about what we want from research rather than merely accepting REPRESENTATION at the tables?

How can we report the still too frequent examples of TOKENISM and show LEADERSHIP to address to address this poor behaviour?

How might we promote more INDEPENDENT groups rather than have a DEPENDENT style of involvement?

What actions need to be taken to develop a greater DIVERSITY and move beyond the ALIKE?

How do we remain CHALLENGING and avoid ASSIMILATION into the mores of a committee or board?

What should be doing to enable and empower INDIVIDUALS and communities rather than rely on specific GROUPS?

I have no immediate answers to these questions but do feel they should be discussed. 

The most important issue here is that we, as patient advocates, are scrupulously honest and clear about any specific interest with industry, charities and government departments. 

But where do we have this dialogue???

Having more research opportunities available for patients - the role of a Clinical Research Network

Next week sees the celebratory day of a continuing effort to raise awareness about clinical research in the NHS. Ok to Ask is an all year effort to get the public talking about research. If you are doing anything let us know on Facebook

On Monday 12th May, I facilitated an event on Advanced Care Planning for the South East Coast Clinical Senate. I also visited Kent, Surrey and Sussex CRN. Research repeatedly shows that people want to die at home but despite all the evidence the reality is that people 

One presentation by Prof Sube Banerjee clearly showed that when we involve people in thinking about and planning for their care especially at end of life that satisfaction levels about service.

This is Dying Matters week with some excellent reports by the National Council for Palliative Care. They are tweeting with the hashtag #YODO - You Only Die Once. This video is fantastic.

Patients were at the heart of asking for more research into end of life care.

So when we are involved in 'research' it is important to remember to drawing upon existing evidence about what people want and asking what commissioners and others are doing to put best evidenced-based care into practice.

Our role is being 'actively involved' is to ensure that research is closer to the needs of the patient, closer to the experience of real people and to improve care, treatments, services, diagnosis, awareness and prevention.

1. THINK PERSON - what do people who want to take part in research need to participate, get involved and keep in touch? Are the organisations person focussed and driven? Are they working together in a joined up manner? What are YOU doing to bring in people's experience to the table and how are YOU communicating with a diverse range of communities and conditions?

2. PLAN STRATEGICALLY - focus for the Clinical Research Network is the delivery of research studies to people who want to take part. 

• With Research Design Service, Academic Health Science Networks, the Collaborations for Leadership in Applied Health Research and Care + with NHS to coordinate and avoid duplication
• We need to consider working together to help people engage with research, be able to take part and to be actively involved.
• There should be a local Calendar of events, a single point of Contacts and a Newsletter to let the public know what is going on.

3. ACCESS - Websites for a start!

The patient voice can help ask questions about how people are able to access research opportunities...

• Is research mentioned on the Trust website home page? (From a clear top tab to a side a-z directory)
• Is there a section about 'taking part in research'? (Explanation about research to the value of participating?
• Can I find out 'how to take part in specific studies'? (From a clear list of open studies to named contacts)
• Am I encouraged to get 'actively involved'? (From local initiatives to advice from INVOLVE)
• Is there any mention of NIHR and working in partnership (From general statements to the LCRN)

I use a simple, highly subjective, RAG rating to give me an indicative score so that I can judge just how public friendly we are to encouraging the public to participate, get involved and keep in touch with research.

We should also ask about equality and diversity in terms of who is being recruited and if all geographical areas of the Network are being covered.

The public can contribute to improving the delivery of studies by considering the actual practicalities as well as feasibility (Thinking about the additional burden of taking part)

There also needs to  Involvement and Engagement - clear statements about how to get involved

4. QUALITY - Almost all service organisations would check with their customers.

• Experience - We are discussing how we will measure 'patient experience' of the process of taking part in studies. We are keen to find out about the actual journey and whether the person would recommend it to others
• Involvement - We are developing a survey of how people have got actively involved and whether it has been worthwhile.
• Learning & Development - We are requesting a report of the numbers of patients, carers and public who have taken part in learning opportunities.

5. AWARENESS - This is a clear responsibility of Clinical Commissioning Groups, General Practices and Hospitals to let people know about research. The Networks can play an important role in influencing and informing these others.

Finally there is a review of Public Involvement in Research - #BreakingBoundaries 

What questions about evidence and research might help those who commission services?

These days I find that as I go to meetings or take part in telephone calls that I get asked questions or to give my opinion on certain issues. I am using these opportunities to put pen to paper, help clarify my thoughts and make statements that lead to improving research.

Today, I was asked what I would say and ask Area Commissioning Teams and Clinical Commissioning Groups that might make a significant difference to achieving the best evidenced based care, treatment and services in health and social care. So, here is my initial list...

Questions about evidence and research to help those who commission services.

1. How are you working with your Local Clinical Research Network to find out what studies and trials are available for your patients? 

Notes: There will be opportunities to engage and join the Partnership Group which brings local bodies together. You could also ask them what they are doing to engage and involve you?

2. What contact have you had with the Collaborations for Leadership in Applied Health Research and Care (CLAHRC) who are tasked with looking for evidence that will make a difference to NHS care and treatment?

Note: You might like to ask how the CLAHRC and the Academic Heath Science Network (AHSN) is working with patient groups and local communities to ensure that patients experiences are helping prioritise issues that need researched? You could ask your Clinical Senate how they are helping to raise awareness and promoting research across the NHS in your area?

3. What are you doing to engage and involve your local GP Patient Partnership Groups in helping address evidence based care? 

Note: You could ask some of your research active clinicians to write articles for the National Association for Patient Participation (NAPP). 

4. How many of your General Practices, Clinics and Care Homes are active in getting people to participate in clinical research and other well designed studies?

Note: There is a growing correlation between research active practice and better health outcomes. You might help bring together people interested in best evidenced based care, including patients and carers, to discuss how to raise awareness and improve access to trials and studies.

5. How could an informed and knowledgeable patient community help you achieve the changes you require to help evidenced based commissioning of services become a reality?
Note: You could use some of these activities to help people understand commissioning. Building Research Partnerships provides an introduction to research - The Critical Skills Appraisal Programme (CASP) develops their ability to contribute.

6. How could patient communities help you inform the public about research opportunities?

What essential skill do you think people might need to help you?

Note: You could get involved with the "Ok to Ask" campaign which is raising the profile of research as an integral part of the patient pathway.

And, almost finally...

7. How does evidence, based on high quality research, help inform and shape your commissioning decisions?

8. How many of your commissioning decisions have been based on evidence that has been through systematic review?

So, what questions would you ask and what advice would you offer?  

Is representation the best way?

Patient involvement in research has, in many respects, become defined in recent years by the practice of placing two people on a committee. The idea that this is the recommended model of practice is, however, a myth. There is no rule or advice that this should be the standard means of active involvement in research. 

The guidance is simple: should you choose to have patient or lay representatives on a group, it is better to have two people rather than one. And yet, we continue on with the practice of seeking to appoint two representatives often without any clear guidance about the role and the intent.

It is also worth noting that ‘representation' does not necessarily require the physical presence of membership of a committee or board. Representation can be an account, a description, an image or a portrayal of the circumstances and events surrounding personal experiences.

The purpose of ‘active involvement’ should be that our needs, as those who use services, are taken into account, our voices are heard, genuinely listen to and are used to inform, shape and influence the making of decisions that directly or indirectly affect us. It is about playing an equal part in the process of decision-making. Involvement is about having a say and influence. It does not mean that there has to be a member of a committee.

There may be times when we can have greater say by remaining at a distance, separated on the outside. There will be other times when we need, not only to be at the table but chairing the direction, discussion and decisions.

The approach of having a lay, patient, or public presence has, I believe, undeniably helped change the culture and helped embed the whole concept of active involvement in research practice, processes and policy. It has certainly helped ensure greater openness, transparency and accountability but so have independent advocacy groups and individuals. 

Representative membership can have its limitations. The domain of decision-making in NHS Research is often done through meetings, boards and committees. Involvement is often set in the context of such meetings requiring attendance and membership.

The terms of reference for these roles are often about bringing the patient/lay voice to the table where the complexity of language, especially in research meetings, almost demands a level of competence and learning.

These factors, therefore, attract a certain type of person - mainly older, professional, with time on their hands, often male and white along with a familiarity and ease with committee processes helps sustain that status quo. 

I am bound to say, as I recognise myself in that description, that there is certain value in having such individuals. We do bring a wealth of knowledge and skills often from other fields of life as well as our more direct patient experience. Our views can be helpful but can never properly reflect the diversity of culture and background of the public in general.

This approach restricts achievement and aspiration...

·       Only the views of those one or two individuals are heard

·       There is no recognised constituency to give authority 

·       Acclimitisation tends to take hold after a few meetings

·       The box of ‘involving the public’ is too easily ticked

·       Little is ever recorded of any impact or benefit

What is required is a more diverse and varied approach, which enables and empowers individuals to inform, shape and influence research not just to rely on a model of committee representation.

A more robust, diverse and meaningful plan of involving people is required.

Log in again next week for more on this issue.

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