Sunday, 13 December 2015

PROMs, PCOMs and mind-melt!

Last week I was invited to the Health Foundation's two day workshop on measuring the outcomes that matter to patients. My tweet from the final day sums it up... 

Since then, I've had a chance to digest the pages of notes I made, and I wanted to blog to share my thoughts and reflections on measuring what matters to people with health conditions (long term, acute or otherwise!). 
By trying to even measure person-centred care, are we medicalising it? 
Measurement is quite clinical, but that doesn't make it bad. I feel that there is an ethical duty for us to make sure that we are spending tax payers money in an ethical way - i.e. on things that have a positive impact! While person-centred care is still slowly being accepted, convincing clinicians, managers, finance directors and boards sometimes means speaking their language. As we say with patients - its about starting where they are - and they are in the grip of measurement, so we must meet them there! 
It is even ok to have some traditional measurements as well - such as process measurements like referrals and attendance figures. I know that self-management support works, and I want as many people as possible locally in Dorset to access that support of they need it (via My Health My Way). I want as many people as possible to get the most out of the service, and that often means attending all the sessions. So I need to know referral measures (to encourage more referrals from particular services) and attendance figures (to explore and compare drop-out rates) to help me have people using our service in order to get person-centred support! 
These process measures are necessary but far from sufficient! 

Making this a tool for people primarily, and secondarily a tool for measuring 
Throughout all the conversations I was most struck by the focus of these various tools for measurement. I feel quite strongly that any measurement tool has a measurement function secondarily to its function as an tool for the individual. 
For example, the way we use the Health Education Impact Questionnaire in Dorset is to stimulate a conversation with the individual and give them some structure to reflect on and acknowledge their strengths and set an agenda for skills they want to improve during our sessions. As a baseline measure and then a 'service outcome' measure, its critical to our contract with the CCG. But face to face with the client, it is a conversation that is useful and meaningful in its own right. This should be the litmus test for any measurement tool! 

I was also surprised to hear how few practitioners had access to the measurement data for their service in real-time! If the measurement 'results' are only received later or even amalgamated at a service level, there is no way for that tool to inform the conversations between practitioner and person, or it to be of any significance to the person. No wonder we are all fed up of filling out endless forms - it can often feel that go into a big black hole somewhere. That is not person-centred at all!  

Are we talking about outcomes for a person or an intervention? 
Science often talked about cause and effect. Everyone was very open about the challenges of attributing a service to the outcomes of an individual, and the word 'contributing to' was preferred - which I agree with. Reflecting more on this, personal outcomes are so personal and have so many variables (since 'no man is an island') that we can't really ever be sure. To really acknowledge this, we have think about evaluation beyond the realm of services. This is where true integration lies - my personal outcomes (such as going to sailing events) might be achieved as a result of the NHS community trust physio and NHS acute trust orthotist, local voluntary sector Sailability group, my parents and friends. The physio and orthotist might have been great, but the 'whole (impact) is greater than the sum of its parts'. For other people, social services, personal budgets and PIP payements might also be mixed in - all of those "services" need to be measured together in the context of the personal outcomes to have any meaning! One service in isolation couldn't get me back sailing again - it was several. I could tell you how good my physio was, but to really understand my personal outcomes, you have to look beyond the single intervention that they provided.
Although, having said that, until the commissioning model changes dramatically (and into what, I do not know!), commissioners will commission services, and so yet again, we need to 'speak their language' and talk about the effectiveness of our services if we have any hope of getting commissioned or recommissioned. Obviously I want to know if 'health coaching' works as an intervention, but we should be evaluating both at the same time - the outcomes for the person and the outcomes for the service. 

Where do we do this measurement? 
As with many things, I was surprised by how these activities were solely set in a clinical consutlation. We are all familiar enough with the statistics about how many hours a year people with LTCs spend with clinicians. We have done enough social mapping exercises to know that people get support from a host of different places that exist beyond the walls of an NHS clinic. Lets think about who and where else these person-centred outcomes can be measured! 

Parity of esteem with 'clinimetrics'
You can have the best PROMs and PCOMs, but if the clinical measurements (clinimetrics) are still given absolute priority and determine commissioning and everything else, then there is nothing person-centred about that! 
In my lectures to medical students, I often share this slide below. I helped me think of the shift needed in the tension between clinimetrics and PROMS/PCOMS. As a clinical system, we place enormous value of the vital signs for life (oxygen, blood pressure etc.). How about if we were to think about PROMS and PCOMS as our vital signs for living or having a life?!

PCOMs don't replace patient engagement 
The best tool that measures person-centred outcomes would be one totally co-designed with people. 
But that doesn't mean the PPI box is metaphorically ticked!
Once used directly with the individual to support them or structure a conversation, a measurement tool and batch of 'data' is only as good as the action/improvements it inspires. Any quality improvement work that follows the analysis of PCOMs should absolutely have meaningful patient engagement. I am sure that sounds like total common sense, of course, but I felt the need to be explicit about it!  

Are these semantics alienating? 
I had total mind-melt after the two days. I felt that I was back at uni taking scribbled notes as I tried to cling onto everything that was being said! I struggled to keep up! I totally get the difference between PROMs and PCOMs, but fear that all these different terms (such as patient-generated, patient determined to name a few) can make it very unaccessible! Which is clearly not what is helpful to advancing person-centred care. I loved discussing the subtleties between the two and could have done so all day, but I am a self-confessed geek when it comes to person-centred care stuff! How can we present these ideas in a meaningful and accessible way to a busy clinician or anyone else who doesn't get excited about it like I do? Those are the people who need to be measuring this, so they can start to understand it themselves and see the impact!  


  1. Appreciate your blog especially as I think some of these issues are getting overcomplicated in the rush to get 'new metrics'. Instead I think more time should be spent on listening to patients and carers about what is really important to them and deriving measures from them.

    Rushing to new metrics often means whatever the metric is becomes important when real 'stuff' gets dismissed and overlooked. The NHS is awash with data/information most of which is unnecessary and not relevant to most people but is a self sustaining industry in itself!

  2. Hello, really interesting and relevant points, thank you for writing this! I think you are completely right that measurement should be taken as a starting point for conversations first, and that they also need to be tied to something concrete. Work I did with colleagues interviewing people with long-term conditions and professional stakeholders in health and social care in order to create a long-term conditions questionnaire really tapped into this as well. Nobody answers questions without thinking about the relevance of the questions (to themselves and to their goals, as well as to the context) and it's massively de-motivating if you never see the outcomes of these conversations.

    I think the point about the combination of different services enabling life is also massively important, and we cannot underestimate how the whole can be much greater than the sum of its parts - or can completely undermine the greatness of each individual part by failing to draw things together or introducing conflicts and contradictions.

    We are meaning-making and striving individuals, at all stages and places in our lives - I think this means that quality of life is an ongoing construction and continuous re-negotiation between self, community, services, and society. Any one questionnaire cannot capture all these factors - and perhaps nor should it strive to - but what we can do is open up avenues of conversation between people and services.

    Always valuable to read your thoughts on this and other topics!

    Cheryl, @schmoobrain