Wednesday, 26 July 2017

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.

...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?

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 ConsultationWe 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.

Wednesday, 19 July 2017

Raising the Standard

Congratulations to Cancer Research UK (CRUK) - a medical research charity which takes pride in doing things well, with scientific endeavour, clinical precision and an inherent desire to only involve patients and public in a purposeful and meaningful manner. It does not rush headlong with the whims of fashion or the changing mood. The charity rightly takes time to do things appropriately.

CRUK are engaging and empowering patients in a very sensible, robust and systematic manner. I truly admire and respect the way CRUK have found a meaningful, reciprocal connection with the public… especially as I was known to be slightly critical in the past. 

(I should point out that I am a Member of CRUK so may have a slight bias. Yet, a part of that role is to offer independent opinion.)

It is great to see patients, carers, families practically involved with such absolute enthusiasm. I believe it is simply because we see that it is making tangible difference. Equally, there is genuine interest and commitment amongst staff, management and directors. A huge thanks to all involved.

As others attempt to identify and describe standards for how we actively involve and engage the public, CRUK in its wisdom has raised the bar with their very pragmatic professionalism - there is purpose in the journey, a direction of travel, different means of transport with regular postcards (emails and tweets) of the journey. 

It is inspiring, innovative and involved. By ‘involved’ I actually mean complicated so it is great to see how CRUK developed their own toolkits to assist staff, teams and researchers to support these initiatives and the patients who take part. 

I had the pleasure of attending an internal showcase of their work recently. I reckon there must have been about 100 staff came to the event. It was palpable to see the value and the benefit but what makes this shared endeavour so different. It was wonderful to see the patients presenting at each stand. 

So, what are standards that are being set here.

The Grand Challenge
First of all there is a clear and unambiguous INTENT - that purposeful resolve to address an issue for the best possible outcome for patients and the public. 

Just look at the Grand Challenge events. Statements such as We are doing this because… can be weighed against the output and outcome.  

CRUK even have a map

Secondly, each project is set within its CONTEXT - an explicit recognition that purpose, place and people determine the way we engage with each other and that one size does not fit all. Just look at the Cancer Campaigns  Ambassadors input with smoking cessation. Statements such In this situation we need to…can be appraised for relevance and appropriateness 

The third feature is having clear REQUIREMENTS - the unambiguous specifications about what is needed from the task and the people. More importantly a guide as to how they will be achieved. Just look at the use of the Sounding Board or the Prevention Sandpit

The detail of each objective: This is what we will be doing and how we will proceed… can be precisely audited against every task. 

Fourthly, there needs to be the constant REVIEW - the on-going monitoring and learning. Just look at the Team, the leadership and the various support tel call, meetings. This How has this been for you and for me…. it is the summing up, the reckoning


Finally, there is the importance of REPORTING - the capturing of the evidence, the celebrating of success and the sharing with others. A report will be published later in the summer with an external event to showcase this work in October 2017. You will have to wait and WATCH THIS SPACE later in year. 

But, you can already read about the IMPACT patient involvement is making here.


If we are to apply any standards to the way we engage, involve patients then they must also empower people to share a common endeavour. Statements must equally be represented by robust measures that lie within the beguiling simplicity of certain questions…

·               Why should I get involved? 
·               What is the purpose? 
·               Where does this fit? 
·               What needs to be done? 
·               What will I learn? 
·               What difference has it made? 

These initiatives by CRUK translate easily between effective practice and strategic policy, between what is wanted and needed, with patients and staff in common endeavour. 

Tea and biscuits are an essentials. CRUK even supply the mugs...(Sorry, I obviously ate the biscuits) 

If you want to know about the various health policies and practice around patient and public involvement then my previous post 'What Should We all Know' might be on interest