Dr Mila Petrova, firstname.lastname@example.org
I felt ashamed at my ignorance. First meeting with my new bosses on a project on an end of life care register, 9 years of health research experience, 5 of them on the UK health services. And I don’t have a clue that GPs can’t “just” check your hospital or district nurses records and vice versa. Those are separate records. Those are separate IT clinical systems that typically cannot communicate. Sometimes those are even paper records.
After 3.5 years of working on the “Prepared to Share” study and researching patient data sharing, I know better. But most patients and members of the public are just like me at that first meeting. Only they don’t feel ashamed. They feel frustrated, angry, worried, confused:
They were asking us all the same questions again! And we didn’t have the answers.
When you’re stressed out, you forget things.
You sound like a parrot all the time!
The district nurses didn’t have as much information as I thought they would, but we signed I don’t know how many pieces of paper saying, “Yes, you can share, yes, you can talk!” (study interview excerpts).
Is more knowledge scary?
Patient confusion was the biggest challenge which Cambridgeshire and Peterborough GPs and Practice Managers (PMs) identified in a survey on data sharing, part of the CLAHRC-funded “Prepared to Share” study. The survey, whose results have just been published in the International Journal of Medical Informatics (free access until 14 Jul – Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners’ and Practice Managers’ views on data sharing) – is the first survey on data sharing of UK GPs and PMs published in a peer reviewed journal. We contacted all local GPs and PMs in all 107 GP practices and received 405 responses (64%).
GPs and PMs are familiar with data sharing. Over 89% have participated in a local data sharing project about frail, elderly patients. Over 76% have used the tools of either the Cambridgeshire or Peterborough projects for data sharing in end of life care (subsequently combined).
Discussions with patients were happening reliably. 89% of participants have discussed the topic with patients “occasionally” or more frequently. Interestingly, those GPs and PMs who saw themselves as highly competent IT users were about 4 times more likely to discuss data sharing than those with more basic skills. Yet they also reported higher patient reservations – saying ‘no’ to sharing, strong opposition, confusion or frustration with being asked again and again. Was more information confusing patients? Were they hearing of risks that discouraged them?
Ahead of the US, ahead of the EU. But how far?
If we focus on figures about uptake and discussions with patients, we may feel reassured. Comparisons with other countries are unreliable (we found only two sufficiently comparable studies), but positive for the UK. In a study in Michigan, 23% of primary care providers and PMs reported electronic sharing. An EU report benchmarking use of e-health concluded that, on average, only 10% of GPs interconnect with other professionals/organisations through a shared system.
At the time of the Cambridgeshire and Peterborough survey, several of the data sharing projects we asked about were new and full of promise. Participation in some was financially incentivised. Was the interest going to last? Unlikely at those levels.
While respondents recognised the benefits of data sharing, this was on a par with recognising its challenges (0.53 and 0.56 respectively, 0 was the neutral point, range −2 to 2). They were also most sceptical about benefits corresponding to hard outcomes and key priorities for the NHS: reduction of avoidable admissions, length of stay in hospital, and cost reduction.
Few of the free text comments in the survey were highly positive: “the best way to deliver patient care”, “vital”, “should be encouraged (compulsory!).”
The great majority of them were negative: “ill thought-out”, “a mess”, “complete chaos and low clinical value!”, followed by the cautious: “the crucial thing is who the data is shared with and why”, “generally a good thing”.
When we looked closer, it was not negativity towards data sharing in principle. GPs and PMs were frustrated at how particular initiatives had been set up and overlapped. They were also reacting to the unrelenting pressures in general practice, to a feeling that no matter how fast you run, you are lagging behind.
The complexity underneath the positive numbers can also be seen in the 40 interviews we conducted for the broader study. They fed into a framework of over 1800 challenges and drivers to data sharing, which we are now prioritising.
The patient, the doctor and the geek
When I started working on this project, I thought that data sharing was, of course, good, all the more at the end of life. If I were dying and were visited by my GP, community nurse and hospice nurse in the same day and asked the same questions (a story from the 2016 Caldicott review on data security), I would have been crying my eyes out, slamming doors or having a splitting headache from suppressed emotion at the end of a day of otherwise exemplary healthcare. I too want those who care for me to know of me and plan my care, not their work.
But now, when I know how practically complex and incomplete patient data sharing is, I hesitate. In a world of finite time and pervasive fatigue, would I rather have my doctors and nurses turn over backwards to share my data, or would I have them listen to me for a bit longer? Catch their breath for a bit longer?
I hope it is a dilemma that we soon outgrow, both as patients and health professionals. That we move faster with technology and its interoperabilty, the legal and governance frameworks and our knowledge and skills.
Most of this is a matter of system change, leadership and technological innovation. It is beyond what each of us as an individual can do.
But each of us can try to understand data sharing a bit better. One of those geeky, boring, peripheral types of knowledge which can save lives and minimise suffering.
And nothing geeky, boring and peripheral about that.
The “Prepared to Share” study has been funded by (CLAHRC) East of England, at Cambridgeshire and Peterborough NHS Foundation Trust, as well as the Health Innovation and Education Cluster (HIEC) hosted by Cambridge University Health Partners (CUHP).
Dr Mila Petrova is the research associate and operational lead of the study and Dr Stephen Barclay is the Principal Investigator.
Feedback and queries most welcome!
For the study and blog, please get in touch with Mila on email@example.com.
For the Cambridgeshire & Peterborough Project for Data Sharing in End of Life Care, please get in touch with Dr Barclay: firstname.lastname@example.org.