“I feel I guess betrayed that 19 months into my partner’s cancer battle we didn’t know about this. I think honesty is the best policy and have no problem with the info being recorded but we should have been told and that the details can be removed at the patients request as not to be made aware at some point seems deceitful”
“Betrayed” and “deceitful” are not words cancer charities quote lightly, but they are right to use them.
medConfidential believes – as we do for all flows of health data – that the cancer registry should be consensual, safe and transparent. Whereas the current data handling practices of Public Health England are coercive, dangerous and dishonest.
“Patients can ask NCRAS to remove all of their details from the cancer registry at any time. Opting out of the cancer registry won’t affect the patient’s immediate treatment at their hospital or GP practice, but there may be occasions in the future when the data that is held by NCRAS can be used to assist in their care or that of a close relative.”
“If patients opt-out of the cancer registry, it may not be possible to contact individuals identified as being at risk in future, such as when an increased risk of breast cancer is identified in women treated for Hodgkin’s disease using radiotherapy.”
NHS Digital is solving this problem through medical ethics and hard work; it seems PHE has taken a Board-level decision to ignore the problem and, in effect, blackmail patients instead.
There can be good reasons to override dissent – many of them related to public health. We have asked PHE for a list of the reasons it thinks it needs to routinely ignore the wishes of cancer patients. That list has never been provided, and PHE has published no detailed justification for its demand for data. Scrutiny of what the data is used for shows its existing arguments to be “thin” at best.
The NHS does direct care, Public Health England does not – and PHE is not set up to keep data for both direct care and secondary uses. As a result, to maintain its turf, it has resorted to threatening patients and their families with reduced treatment for cancer both online and in printed literature. We understand “the Director” has called people who opted out, in person, to “encourage” them to rescind their request.
While PHE admits that 150 people have opted out of the registry, it is unclear whether these patients took at face value PHE’s public statements about this not affecting their care, or whether they fully understood any contradictory statements made in private .
This is why direct care and secondary uses must be kept separate – there are sometimes good reasons to have additional copies of data. This is one of them.
The problems of PHE are, however, far wider than just those regarding the cancer registry. While the current review terms are correctly narrowly defined, the solutions may have more general applicability by NHS Digital.
Who is responsible for this mess?
While actual data release decisions remain unpublished, PHE assures us that there is a “reporting line”.
The data release process is apparently managed and supported by an Office of Data Release, decisions are made by the Information Asset Owner, overseen by a Data Release Assurance Board, which does no assurance and which is both chaired by the Chief Knowledge Officer, and supposedly “overseen” by PHE’s Board… via the Chief Knowledge Officer.
While this may – at a glance – seem roughly similar to an HSCIC process, let us add some names to these various posts. For the cancer registry, every single one of those roles is held by the same person: Professor John Newton.
It is clear that PHE has a serious data governance problem.
PHE remains in denial
PHE’s annual report claims (page 119) it has done a “Partridge Review”, as HSCIC did in 2014. However, while the HSCIC process was a model of transparency – it was public, conducted by independent analysts overseen by a HSCIC non-executive board member (Sir Nick Partridge, hence the name) and its outputs were clear and contained both an acceptance of problems and suggested steps to remedy them – by contrast, PHE has chosen to keep its review secret.
It has chosen to hide the process of reform from the public, and chosen to refuse to acknowledge any form of critique. The review was conducted by an in-house consultant, and was delivered to the Information Asset Owner (Professor John Newton), not the Board (on which he sits). PHE has refused FOI requests for that review, and won’t talk publicly about even the topics of the 4 areas of “significant concern”.
This is not a process in which the public can have any confidence at all. Indeed, it gives every impression of a cover-up by those complicit in a culture of failed priorities. And, as such, through the considered decisions of PHE and decision makers, the vitally important cancer registry (and other datasets) remain one small misstep from a collapse of public confidence.
While patients have the legal right to opt out of the cancer registry, as part of its move to NHS Digital, it should come under the broader Caldicott Consent Choice.
As there are direct care purposes for which the registry is used, a separate system for those purposes should be maintained by NHS Digital. As a result, where there is a clear and pressing need to use 100% of the cancer registry, rather than the 98% who have not dissented from processing, then approval can be sought from the Confidentiality Advisory Group at the HRA, using the powers CAG acquired under the Care Act 2014. That may simply be the validation of marginal outputs from the 98% dataset, and would be a very specific question (since it would only be confirmation of the output of a research process).
However, the Cancer Registry is currently releasing details of cancer patients to private contractors for purposes that NHS Digital would not have approved itself, or which would have had to have opt outs honoured. These requests are excluded from the PHE Data Release Register. The cancer registry is therefore a ‘back door’ leak of identifiable data about the patients and their cancers.
Given the role the new chair of DAAG played in creating the above cancer registry consent fiasco, continued lobbying to “use my data”, and his other responsibilities and funding, it would seem the current DAAG/IGARD chair is demonstrably unfit to override dissent for the cancer registry.
Demonstrate to patients who has used the data, and why, and what we learnt
The demand for “more data” is endless, and providing more data will not solve that problem – all we see is more demands for more data. Will doing the same thing over and over again generate a different result?
Showing patients what was said to them, and what happened next, will hopefully focus minds away from hyperbole, improve the quality of layperson explanations of projects, and show what works for better outcomes, and what does not.
The cancer registry is a vital resource, but it should be accountable to the very patients whose data is within it, ensuring that data is used properly, and not used wrongly. Currently, those who release the data are not accountable even inside PHE, and keep their decisions secret from the public.
The details matter
As with the failure to implement type-2 opt outs properly for hospital data, and with PHE’s actions at any step of this process, misleading the public has consequences for public trust and public confidence.
It is entirely possible to have a consensual, safe and transparent cancer registry, delivering benefits to patients who wish their data used legitimately. We must and will move away from a coercive, dangerous and dishonest model – the question is solely the manner, governance, and price of that move.