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.