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.