Time to Raise the Standard

There is much talk currently about developing standards for involving patients and the public in research. It is timely and necessary. You can get involved by completing the online survey – here.

The key feature of any standard is that it can be measured and checked. It is a mark to compare our efforts with others. It is a badge that can help indicate quality. It is an opportunity for personal, professional and organisational learning.

It is simply so that we can describe, define and learn from the differences between apples and pears.

The International Organisation for Standardisation (ISO) defines standards as...

...specifications, guidelines or characteristics that can be used consistently to ensure that materials, products, processes and services are fit for their purpose.

Bringing real and measurable benefits to almost every sector imaginable, standards underpin the technology that we rely on and ensure the quality that we expect.

This means actual, concrete statements that work in practice. Each capable of being precisely gauged and then graded. Only then, can we compare and contrast and ensure involvement adds value.

One of the challenges we face is whether we are setting standards about the process of involving people or developing ones which will help us measure the value of such participation.

The proposed standards are a great start, a move forward in our thinking but I would suggest that they are more akin to hallmarks of good practice.

My concern is that I have been in meetings that were 'inclusive'. We were all there but the decision had clearly been made earlier. I have 'worked together' but had a sense that I was not an equal partner. I have been well 'supported and learned' much but unsure as to whether it was ever reciprocal.

Such proposals are, I would suggest, more about the process of involving people rather than the purpose of this involvement. 

Sometimes, we need to disagree, to be challenging or even to step apart to have a full blown argument. It cannot always, nor should it, be a cosy relationship. Working together does not necessarily lead to improvements. It is about what we do, when we work together. Inclusiveness in itself will not address health inequalities.

There are many positives in the way this movement has progressed over the years but there are still people who do not accept that we as patients should express an opinion, have a presence or be actively involved.

Our work must be about making a mark. There must be a clear imprint. Without a purpose we will be unable to see an impact. There will be no indentation - our involvement will just have been that - involvement. I despair when I hear some people say that the involvement is the pinnacle.

Our first standards have to be about Purpose and Intent. We have to ensure that our presence (verbal, written and/or in person) is meaningful and leads to change. We need statements like:

•                The aim of the work for health improvement is evident

•                The purpose of the involvement is clear and unambiguous

•                The means of recording, reporting and giving feedback is apparent

Context matters for involvement. Assisting a researcher with their lay summary, membership of a trial steering group and sitting on a funding panel are quite different asks. Equally the research worlds of service delivery, clinical and biomedical sciences have separate needs.

•                An explanation of the context is provided

•                The reasons for this approach to involving people is explained

•                Opportunities to learn from each other are provided

There needs to a section on the Requirements, the realities about the actual task, what is needed, the support, the time and remuneration if appropriate, etc., etc..

•                A role description and task specification is provided

•                Expectations are explicit on both sides

•                A 'plan, do, study, act' approach is adopted

•                Regular reports on progress are collected

I could go on but...I believe that we may need to produce a core set of standards with some separate ones for niche or even strategic roles.

I am not trying to create extra burden with the weight of paperwork but we have to examine more closely what we do and how we do it. We need to apply some rigour, some regular assessments if we are to properly develop our work.

It would be relatively easy to randomly select people and simply ask

⁃               Did you know why this was being done?

⁃               Was it made clear to you?

⁃               Did you know what was expected of you?

⁃               Etc.

These are questions are for all of us. Standards applied that are applicable to the patient and the researchers, the funders.

Well done to those who have started this debate and please contribute to the Consultation. We still have a hill to climb!

You can read in my previous post, Raising the Standard, about how this is put into action by work taking place at Cancer Research UK.

For those of us in the sphere of Patient and Public Involvement my post Is This What Should We all Know has most of the links to key documents.