There’s a famous saying “if you do what you’ve always done, you’ll get what you always got” (I believe it was Henry Ford). We’ve been hearing a lot around the Patient Revolution in the UK healthcare, with openness and transparency at the heart, however with political agendas and the turbulent nature of change in the mix we might be heading for more of the same when it comes to openness.
We have been hearing alot about the Patient Revolution since the Coalition came into power in 2010 with plenty of political zeal currently added to the Friends and Family Test (FFT), which is David Cameron’s ‘gift’ to the NHS. If you need to refresh your memory you can find more details here.
I believe we have to be realistic and say that the friends and family test may play a part in a revolution but it is not ‘the revolution’. In fact, unless there is an improvement in the way patient feedback systems are implemented and the way the information is shared, to fit with openness and transparency, we will be making it harder for patients to be part of the revolution.
I have been a keen advocate of open data and online patient feedback services such as Patient Opinion while at times contributing to the development of a small number of services. During the last few years we have seen an expanding online patient feedback ‘industry’, which on the one hand it’s great to see competition, while in reality I feel it creates confusion for patients and a watering down of numbers of individuals contributing.
The friends and family test has the potential to cut through this busy market and offer a way to gather patient feedback both at a localised level as well as in sufficient numbers. I do have concerns (well 3 concerns) over the initial pilot that has been running in the Midlands and East Region. My concerns relate to the way the test will be implemented, the way the data is presented and an apparent overall lack of strategy to work with other feedback services.
During the initial Ipsos Mori consultation on the FFT “…it is also worth noting that the public did not appear convinced that this was a necessary measure – with comments about the cost of implementing, and also that they would tend to rely on GP recommendations, or other data, such as mortality rates, to decide which hospital to go to.”
The friends and family seems to be driven from top down political agenda and without openness and transparency in the way it will be implemented before we can say revolution. If the test is not evaluated we may see it implemented and used incorrectly, for example placing too much pressure on frontline staff instead of the commissioning process.
Current forms of patient involvement in service design often falls short of actual co-design, as the focus is mainly on processes such as efficiency savings,patient flows and pathways rather than patient experience, especially when the input from patients and patient groups (such as the new Healthwatch) seem to be getting watered down. The friends and family test must not be used as an alternative suggestions box and it is not an excuse to stop listening in public forums and other feedback systems.
Also I wonder are we witnessing a new service being launched before the pilot is properly evaluated and scrutinised, especially within an open public way? Personally I feel in the age of openness the Department of Health should be allowing others to access and analyse the raw data; to become involved in researching the effectiveness. I did attempt on a number of occasions to access to the underlying data in the pilot FFT program. While the people I spoke to at the West Midlands and East Quality observatory were trying to be helpful and not by any means obstructive, there was little in the way of knowing how to help me with my quest for accessing the open data. Eventually I got access to some of the data (at a Trust level only) via a manually downloading Trust scores month by month from the FFT dashboard.
I hope the Department of Health improve the openness and granularity of the data especially when in the same Ipsos Mori report it was stated “… if trusts are being encouraged to use the more detailed underlying data to review their performance, this data should also be made available to the public although this may be decided at a local level”.
The FFT data I managed to get hold of in all fairness is pretty meaningless to the layperson and to be perfectly honest it was hard to grasp for me. In fact I would say in the current patient feedback market there are a number of information displays that have little meaning but that is another post. With the FFT the public display was at Trust level (like one or two other services have gone for) but also was reduced to a number which without context is pretty meaningless.
For the FFT to have context and meaning we need to see the test has led to change (and not just be told this is the case), much like Patient Opinion reveals the inner workings of change happening. Personally I support the mechanism that Patient Opinion has in place which offers Trusts the ability to listen to stories, respond, make changes based on the experiences of patients and report these changes. This is an open and public service showing the inner workings of change happening inside the NHS. It’s a shame that many Trusts do not use this feature, while there are certainly many examples of Trusts, hospitals and units being more open about change happening. The new Friends and Family test seems to be moving away from the publicly visible cycle of change and moving back to closed professional led meetings.
I would question do patients know where to go to leave comments, compliments and complaints when treated in the UK? We now have numerous platforms such as NHS Choices, Patient Opinion and I want Great Care. A number of these services are attempting to merge their services however all of them seem to have separate mechanisms to engage staff in the process of listening and responding. Are we about to lose the openness gained through the freedom of information channels once fought for in PCT and SHA. It seems SHA’s have done very little to make sure that new freedom of information channels are made clear to the public in the reformed NHS structure.
The levels of perceived patient involvement in the NHS by the patients themselves remains poor at times, Trusts and patients naturally having to choose which system to leave feedback with and dedicate resources too. Out of curiosity I’ve pulled together and merged a few data sources to get an overview of how NHS Trusts measure up for listening to patients, such as stories told and listened to on Patient Opinion, Care Quality Commission scores for listening to patient views and Operational Framework scores. The scorecards can be accessed here and show patient opinion stories, CQC scores out of 10 and Operational framework % score.
Finally (and I have gone on far too long I know), patients and carers should continue to share the good and the bad publicity online through 3rd party services such as Patient Opinion. I have seen a number of NHS Trusts buying and implementing in-house patient feedback services, however I would argue this weakens the disruptiveness of feedback mechanisms; rarely does a revolution happen when the institution controls the lines of communication. I believe using social media, 3rd party feedback services and open data are crucial in the patient revolution.