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CCG Series: Whose information is it anyway?

CCG Series: Whose information is it anyway?

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Dr Derek Greatorex's CCG has had efforts to innovate thwarted by data access issues. He explains his frustrations, exclusively for The Commissioning Review. 

"Data is not information, information is not knowledge, knowledge is not understanding, understanding is not wisdom."

 - Clifford Stoll

Effective commissioning demands a number of prerequisites, some of which may be considered essential, some desirable. Among these - and this is not intended to be an exhaustive list - are an understanding of the local environment, effective communication with the key people in the system (users of the service, providers, stakeholders etc), a historical perspective of where we have been, a clear idea of where we want to be, and adequate data to inform the process. Now, as the quote from American astronomer Clifford Stoll suggests, access to data is not an end in themselves, but without it,  I would contend, we are merely dealing in innuendo, anecdotes and supposition.

Look back to the early days of new clinical commissioning groups (CCGs) in 2013 when the dawning realisation came that no provision had been made under Section 251 of the Health & Social Care Act 2006 for CCGs to have access to patient identifiable information. Primary care trusts were allowed access as they received a legal exemption under Section 251. At the time we were assured this would be sorted out and NHS England stated that the hold-up was expected to last "weeks rather than months”. 

This had a immediate impact on commissioning as the flow of data from providers dried up. We were no longer able to track individual patient activity or validate invoices. But the effects went wider than this: our risk stratification tool used to generate reports for practices to populate the virtual ward scheme run by our practices also ground to a halt for several months. 

This scheme helps practices to identify patients with complex needs at high risk of admission and develop proactive case management. Another consequence was to put on hold our work in reducing alcohol related admissions as we were unable to identify these individuals.

Since the middle of last year there have been many attempts to find a solution, including registering our CCG as a safe haven and using a commissioning support unit (CSU) to provide pseudonymised data. Yet this is at a cost. Not only do we have to use CCG monies to access this information that could otherwise be used for the purposes of patient care or developing innovative redesign schemes, but previously we received this at no or little cost and we still cannot achieve all we would wish to if we had better access. What I have yet to hear a convincing argument for is what is so different about those CSUs certified as safe haven that could not be applicable to appropriately certified CCGs? Yes, this might demand a change of legislative framework but is it so difficult?

On top of this we have had the care.data issue which has generated a huge amount of suspicion and mistrust in the general population. My worry is that the public will confuse this issue with that of information sharing for the purposes of clinical care. During our recent public engagement events as a CCG, we learned that the vast majority of users of the services were astonished to realise that information about their health care was not more widely available e.g. when accessing out of hours or secondary care services. The other message was that of only having to tell their story once rather than repeat it in each new healthcare setting. I am clear in my own mind that many of the gaps in the system into which patients fall are due to lack of effective communication systems. As a CCG we feel that improving these data flows are a keystone to a more integrated system but I worry that the furore around care.data will have a spill over effect into the public's suspicion around data usage. 

To return to Clifford Stoll's quote, data is not an end in itself but a point of beginning on the pathway to understanding and wisdom. Of course we must use data wisely, but the debate over who has access to what and where has been around for as long as I can remember. We have a good idea of where we want to get to but seem singularly incapable of getting to that point. No-one is blameless - neither politicians, policy-makers, the media or clinicians - but until we can crack this one then unfortunately it seems to me that it is ultimately patient care that will suffer.

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Comments

A very good piece. And quite right to link it back to patient care.

We have also seen this picture elsewhere in the country, although to be fair there are also many areas which have managed to sustain information services to commissioners and even grow them.

Graham Head

The NHS has lost the trust of its patients, and it is our data and we do have a right to decide who shares it.

I wouldn't trust the NHS with the most basic information about my health and they now have found a way around having different identities to protect information I do not want shared.

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