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

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