The data revolution envisaged in the information strategy for England is an unqualified step in the right direction. Putting most statistics we hold in the NHS into the public domain will unquestionably drive change
One pioneer was cardiac surgeon Sir Bruce Keogh, who worked with his colleagues to publish case-mix adjusted mortality statistics. The result was a determination among surgeons to improve relative to their colleague down the road. Standards were driven up by peer pressure, not by the public shopping for surgeons with lower mortality rates.
That is all very well for a specific procedure, traceable to a given clinician. Understanding data on institutions is trickier. The first problem is the tyranny of the average. Granularity is all. That is why the second Cancer Patient Experience Survey for England is so interesting. Not only does it tell us that broadly the same trusts are at the top and the bottom of the league table as last time - if you took this measure alone you would avoid London and move to Yorkshire - but within each trust it says which multidisciplinary team is doing well and what part of the overall patient experience is the issue. Is it the lack of financial information provided by the breast cancer team or is it not being treated with dignity and respect by the prostate cancer team? So, no matter how good a trust, the senior team can spot which aspect of experience could do with a nudge.
It is the ability to interrogate data and target improvement that is helpful. That is why, in parallel with running the survey, Macmillan Cancer Support has been working with patients and clinicians to develop the “how to” guide to sit alongside the 50 or so survey domains. If a trust is “red” on, say, patient dignity, what should it do? Saying it must do better is useless; offering to help - in this case by having a values-based standard that identifies the behaviours patients recognise as showing respect - is more useful. That is my first challenge to the information revolution; transparency with no focus on changing outcomes is not enough.
My second challenge is whether putting data out there does result in different patient choices. I don’t know the answer. If I have a cancer diagnosis, will I really go on the web, look up the local hospitals, and make my decision based on the data I see? How we present data will be key - clearly not by making me visit each hospital website or download spreadsheets from the National Cancer Intelligence Network website.
The approach we have taken at Macmillan is to work with patients with colorectal cancer and design a tool with which they can compare hospitals and look at what peer review, the cancer patient experience survey and financial information (car parking) and services databases say. Our pilot will tell us whether patients will avoid hospitals that have, say, a major concern identified in peer review.
My third challenge is this: while I absolutely support transparency and choice, data and information without support loses much of its power. Information is hard to digest for even the smartest, most capable person when in shock. Someone to talk through the treatment options is required either in person or virtually with the help of a decision aid. And as Angela Coulter reminds us, it is supported information that results in patients opting for less invasive options. Information alone improves satisfaction with a decision but does not change it.
The next challenge is the torrid topic of data governance and gatekeeping - one legitimate, one not. Patients expect their data to be shared among those who can support their care; they are perplexed when asked permission for one NHS institution to share data with another, with primary care or with social care. They expect trusted third parties (Macmillan would be a good example) to have the right to look at anonomised patient data for research and service innovation.
I have one last challenge. The goal is “no decision about me without me”. That is not only about data, it is about culture. It is about explaining the quality of life trade-offs of fourth-line chemotherapy, and the stiffness after knee surgery that might stop you kneeling to pray. Truly co-created health is about educating patients, clinicians and changing the service. It is designing services to keep people well and at home, not treating them well when they are in crisis and hit A&E. I may buy flights online but I will talk to people before I buy a car. Treatment decisions are not shopping - they are bigger than that.
We need to remember we are at the start of something. It will take time for the information revolution to move from transparency and choice to supported information and shared decision making. But the farther and faster we run today, the sooner we will get there.
Ciarán Devane is chief executive at Macmillan Cancer Support.
My prescription for the Information Revolution:
- Get as much data into the public domain as possible. The data belongs to the public not to the system.
- Publish data at the lowest level of granularity possible. Only in that way can we target efforts for maximum impact.
- Allow qualified intermediaries access to patient level data to do their own analysis. Approval should be institutional not case by case.
- Set an expectation of solution development. The link between data, insight and innovation is what drives outcomes, not analysis alone.
- Present data in the form which helps patients. They want to understand so they can make good decisions - that is what genuinely informed consent means.
- Accept the cultural change will take longer, but use transparency to encourage it.
- Remember though that the support to go with the information is what leads to shared decision-making and co-created health.