Leadership, and a strategy transplant from NHSBT would do the patient data debate no harm

Today NHS Blood and Transplant (NHSBT) has called for a radical change in public attitudes and behaviours towards organ donation.

The public have been asked to respond to NHSBT’s new strategy.  This asks people to consider some tough questions such as whether registered organ donors should go to the front of the queue for organ donation ahead of non-registered patients?   Here’s a piece about it from The Independent. Last week the Welsh Assembly also voted in favour of introducing an opt-out system for organ donation from 2015.

All credit to NHSBT for the boldness of its strategy. Also for the very direct way in which it is explaining what the challenge of on-going shortfalls in organ donation means in terms of lives lost.  It should also be applauded for its plain speaking approach to setting out the hard choices to be made if donation rates are to go up.

In the last few years NHSBT and its partners seem to have made considerable headway towards breaking through the glass ceiling of public attitudes on this.  It did not always seem that this was a possibility.  It only feels a few short years ago that the winning of public support felt like an insurmountable mountain to climb.

I wish the same could be said for how far we have come in the patient data over the last five years.  Or at least that was my reaction when I listened to this morning’s news reports about NHSBT’s strategy.

On Tuesday I attended a Wellcome Trust workshop to consider some new research they have commissioned on public attitudes to how personal data is shared and used.  It’s an interesting study.  It doesn’t seem to be public yet otherwise I would say more about the findings.  But it was conducted as part of their excellent ‘Spotlight Policy’ series.  Importantly, it looks beyond the health arena at attitudes to use of data in other areas.  Much as I found the research interesting, the ensuing debate could have been a carbon copy of discussions – many discussions(!) I have attended over the years on this issue.  It certainly depressed me in highlighting the lack of forward momentum in terms of policy and practice. And that’s in spite of things like the NHS Constitution, Caldicott2 etc.

It is not that there is no progress.  It is simply that progress has been exceedingly slow.  Nonetheless, even glacial change can feel like revolution, so tired and weary does one feel after a while. It caused one of my colleagues at the meeting to say to me that they just wished someone would make a decision, ask direct questions and take a run at them with the public. Like NHSBT.

I have been cogitating on the reasons why we do indeed move forward at a snail’s pace.

Is it that we have too many voices competing for leadership in the debate but no one having overall leadership and responsibility?  (It does help the public to know who to shake their fist at after all).

Is the debate in the wrong hands, framed primarily by those who have a self-interest in a certain outcome?

Is it that we lack a strong and independent consumer voice (not our charities I should add) that represents the majority but reflects concern for the minority – a National Consumers Council (NCC) for data (see below)?

Is it that there is no real attempt at engagement with the wider public and political agenda on data use in the way that NHSBT has? [the latter is self-evidently true in my view].

Is it that organisations are weighing up their decisions and actions based on false assumptions and, in essence, fighting ghost?

Is it that…?

…..I am afraid I do not have a hard and fast answer other than ‘all the above’ come into play.

If there is any reason to be optimistic about the future it is because at least the Wellcome Trust work began to ask a range of questions which gets us nearer to understanding the values and principles which people are using to make decisions on how their personal data is used in different contexts.

In my view the debate about patient data in research seems to have been conducted in a sort of suspended animation; in blessed isolation from what is happening more broadly across society and for its citizens.  This has caused some of the statements made by scientists seem highly discordant to people when they compare them to their life experience.  So, saying it is technically not feasible and indeed scientifically problematical for people to restrict access to certain parts of their data feels very ‘black and white’ and indeed unreasonable to individuals unless the reasons, the pros and cons, are made clear.  Even more so when they realise that the debate within research is often about how things need to be done differently.

In this light, maybe we should be forging new alliances and working with people like the nascent Consumer Futures organisation as soon as possible.  Their brief is broader from a consumer standpoint and they have already identified the digital landscape and data as priority issues for their work.

New thinking is needed.  But, above all, maybe we just need a dose of good leadership, and a transplant of strategic thinking from NHSBT.

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