#AboutMeLeeds – It’s A Matter of Trust

I am really interested in the power of information to transform care and improve safety. You may have picked this up from an earlier blog – “Civil War, Heart Failure, Sex and Big Data” – and some people may know I was a professional statistician for a while. So I was delighted to be asked to contribute a blog to #AboutMeLeeds – a week long discussion on data and privacy and innovation. Details via Victoria Betton’s excellent Digital Mental Health Site are here

All of the blogs are worth reading – and cover diverse and bumpy ground. From using data to transform care, to critical questions like “how private is private?”. Find them all here


“It’s a matter of trust

The Secretary of State for Health, Jeremy Hunt, did a back to the floor session in our services last week. He worked alongside health and social care staff looking after older people who needed extra help to become well enough to go back home. During the staff round table discussion at the end of the session, over a cake and a sandwich, he asked what would be the biggest change that would improve care?


The answer may surprise you. The physiotherapists, Occupational Therapists, Care Support Workers, doctors, nurses, catering staff and others did not ask for more staff or better facilities but better data. To have a single set of information that could be communicated once, added to anywhere, shared and held electronically would make clinical decision making, care preferences and communications better. The nurses and social workers who met Norman Lamb, the Care Minister, said pretty much the same thing.

What gets in the way of this?

Alongside the technological and cultural issues lies a complex issue – Information Governance. Two words that strike fear into the heart of many who wish to revolutionise healthcare.

Surely the NHS and Social Care organisations should be able to share all data with each other?

No they can’t. A sensitive issue you have shared with your GP may not be relevant or appropriate. For example, should relationship problems that are causing stress in a relationship and potential mental health problems be common knowledge?

OK, but don’t people believe that this happens already anyway?

Perhaps they do – although anyone using the service over time will quickly know this is not the case. GP clinical records are not visible to all community staff. Hospital records are not shared outside the four walls of the hospital and many community records languish on paper in people’s homes and health centres. This needs to change and it must be done safely.

For me, Information Governance is as important as Clinical Governance. Keeping the information that we hold about patients safe and using it appropriately will be at the heart of reforms – for two reasons:

Firstly, it is a matter of trust. The NHS and Social Care both deal with people at their most vulnerable and hold information for which stigma remains. Mental health conditions, sexuality, alcohol and drug abuse, HIV….issues affecting people from all social strata, despite the best efforts of brilliant campaigns like Time to Change. Trust is at the heart of the relationship between health and social care and citizens. We trust our GP more than any public figure – 94% trust rating according to MORI for example – and if we are to succeed as we radically transform and change care that trust must be retained. [We can have a go at reducing stigma alongside this too].


Secondly, services must be integrated around the needs of people not organisations. This requires data to be shared in ways that are currently not feasible.  Real time data, that are accessible to patients and care givers, in ways that my staff were demanding from the Secretary of State. This requires the way we think about Information Governance to change – to be a gateway and not a barrier to sharing data. This will be harder than it sounds. As the NHS becomes more complex and pluralistic, the approach will need to change – and patient consent and trust may become a matter of personal politics as much as safety.

Is it possible to get this balance right?

Yes. If we can assure people that they have a say in what is shared and create simple mechanisms for giving consent. People already make informed choices about what they will share every day on social media, for example. Some of their choices may appear unwise – but they are theirs to make. This will need the right clinical leadership, the right public debate and a focus on the real prize: Safely sharing your data so we can always provide safe care… and ultimately so we can stop wasting everyone’s time asking questions you have already answered.”

Thanks to everyone at the Leeds Data Thing for their support

4 thoughts on “#AboutMeLeeds – It’s A Matter of Trust

  1. very interesting big nothing we IG leads have not heard before, any issues about restriction or delay in sharing is IG. Has anyone visited me and asked me what my issues are ? NO.

    Let me say that IG/Data protection does not say no, but that it must be done legally. Let me give a simple answer that frustrates IG leads.

    We need IT systems that will allow us to select data that can/should be shared from that which is not relevant for the care of a patient.

    The NHS purchases systems that do not allow restriction, its all or nothing. which makes the Caldicot principles mean nothing. As the data controller I would simply like to know what other care providers need to safely treat patients and let them have the data. What stops me ? systems not designed with privacy in mind. ‘privacy by design’ and not access to EVERYTHING. When will people listen to IG leads as well. Happy to talk to anyone who will listen. Barry

    • Thanks Barry – I am a big supporter of IG. IG strikes fear into the hearts of many because of a combination of ignorance and the lack of integrated systems thinking in system design. Like you I think it needs designing into systems appropriately. Just as a new service developed needs the clinical governance built in. Interesting points about “privacy by design”.


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