Reflections from a patient representative

What are patients’ priorities in terms of Quality Improvement? What can clinicians and providers learn about what needs to be done?

Steve Allen, Tackle Prostate Cancer

I have been involved with NPCA as a patient representative for Tackle Prostate Cancer for two years. I have to say this was initially quite a daunting experience – if nothing else because of all the acronyms that were so freely used (and that I had not a clue about). Like many patients, I was also totally unaware of the size and complexity of the Audit and what information was collected.

When I was asked to become involved with a Quality Improvement workshop I was a little sceptical about the whole thing and what might be achieved. I have to confess that, as well as being a patient who has experienced prostate cancer, I am also a retired consultant anaesthetist. I was therefore aware of the reticence that some consultants (and other senior healthcare professionals) can have about comments being made on the standards of practice within their hospital and indeed about their own personal performance. Was this meeting a potential recipe for disaster?

I could not have been more wrong.

The over-arching impression I have of the day is one of total open-ness from all who attended. There was a willingness to take part in constructive dialogue to improve the quality of care for their patients. Of particular note were those speakers who talked very honestly about their experience of being identified by NPCA as having outcomes that were much lower that average and how they initiated strategies to improve matters. It was also quite obvious that such situations were handled very sensitively by the NPCA staff involved – there was never an air of ‘accusation’ but more one of wishing to help and support. (I must confess to sometimes having wandering moments of random thought during some meetings, and during this part of the day a song came into my mind: “It ain’t what you do, it’s the way that you do it – that’s what gets results”. That seemed to sum up the way in which under-performance was identified and handled by NPCA.)

But what of patients? What do they want to see from QI initiatives? What would benefit them? I went to the meeting with a totally open mind, but also with a number of questions as well.

What do patients want from ‘Data’?

Many patients are not familiar with the NPCA website and the detailed individual results available on their own hospital unit. Indeed, some might feel almost guilty at checking up on such results – and what would they do anyway if their results were poor? Is it better to be blissfully ignorant?

Some other patients, like myself, are heavily involved in such activities as raising awareness of prostate cancer, working towards better screening and diagnosis, highlighting areas where treatments can be improved etc. The NPCA Audit provides a wealth of reliable and up to date information which can be used when giving presentations and talking to others. However, these results could be in a slightly more accessible form. The Infographic and Patient Summary goes some way to address that, but more could be done. Greater publicity of the available results, easier access within the NPCA website, clearer interpretations of the more complex comparisons of results – much could be improved a little. This is now being addressed through the recently formed NPCA Patient Forum. A group of patients recruited from all over the UK has already begun to initiate its own QI in terms of information presented, and put forward cogent and practical comments.

What do patients expect of their treatment?

• No side effects
• Minimal impact on quality of life
• Equilibrium between quantity and quality of life

Much can be gained from the NPCA results reporting on patients’ experience of care following diagnosis, and the side effects and quality of life following radical surgical or radiotherapy treatment. For instance, information on such problems as incontinence and sexual dysfunction are of paramount importance to patients and are reported by the NPCA. As the NPCA only started reporting for men diagnosed from 2014, information on the ‘quantity of life’ will be reported after further follow-up.

Performance indicators are used each year so that direct comparisons can be made and changes can be identified – all very much to the benefit of patients. Given the opportunity, patients would probably include many more.

What do patients expect of their healthcare providers?

• The use of up to date technologies for both diagnosis and treatment
• Improved availability of support services:
– Access to nurse specialists
– Sufficient information and support
– Adequate access to specialist services – incontinence and sexual dysfunction clinics
– Ease of access to the hospital itself – adequate free car parking for regular attendances for treatment
• Local availability of all treatments wherever possible

Findings from the NPCA have highlighted many such important factors on the basis of clinical data. Examples are the uptake of mpMRI (multiparametric MRI) and its implementation before prostate biopsy, the earlier appropriate use of adjuvant therapies (chemotherapy) in newly diagnosed metastatic prostate cancer.

The NPCA surveys hospital teams each year to find out about the provision of support services. However, patients have sometimes questioned the accuracy of the responses of their local unit. Units may report that a service is available, while patients’ experience is that not all are offered or can access the service that might exist in theory. However, the NPCA cannot be criticised for that. They can only report the information given to them.

Those of us aiming to improve the care of patients need hard data and robust results to support our efforts. NPCA does contribute greatly to this. We could do with more, but we have to understand how difficult and time-consuming such a process is. However, that shouldn’t stop us from asking and pushing for more.

As a patient I want the hugely complex task that is the NPCA not just to have the ‘static’ outcome of reporting reliable results, but also the ‘dynamic’ outcome of healthcare providers using this information to improve the quality of care for their patients. The QI workshop reassured me that this was happening and would continue to do so.

What can I do with this information as a patient?

Like many others, I have a passion for improving the lives of other patients. I can use positive outcomes demonstrated by the results to reassure others of the improvements in care that are being achieved. I can also use the negatives to highlight the areas where is more work to be done. It is, for example, quite staggering that 16% of men still have metastatic disease at the time of diagnosis – despite the efforts of many of us to promote awareness of PSA testing in appropriate men. There is still a lot to do.

Obviously one of the problems of statistics and data is that you can select and highlight the bits that you want to. Ensuring proper use of the information is as important as producing it.

Which brings me back to the song – but with an added word: “It ain’t only what you do, it’s the way that you do it – that’s what gets results..”

Last updated: 9 November 2020, 10:40pm