By Paul Walker, Chief Technical Officer, Skills for Health
The implementation of a large-scale data collection service from UK GP patient records has been delayed by two months after unions and sector bodies who represent doctors aired concerns over a lack of transparency and public engagement about the right to opt out.
While welcoming the General Practice Data for Planning and Research (GPDPR) programme deadline extension last week, in a letter¹ sent from NHS Digital and NHSX to health and care organisations, Paul Walker, Chief Technical Officer at Skills for Health, discusses how informed consent is the key to maintaining public trust on how their information is used by GPs and the wider NHS.
Why have GPs voiced concern?
Informed consent is an essential and integral part of patient care, and absolutely key to patient and public trust, not to mention medical ethics and the whole ethos of equitable healthcare.
It is hardly surprising then, that for many patients to learn that their private health records, held by their local GP, are being transferred to a national database with very little warning or opportunity for dissent, has caused concern amongst GPs over its potential impact on the trusted doctor-patient relationship.
Needless to say, the collection of patient data and enabling its use for research purposes is not new. NHS Digital’s safeguarding, privacy and security policies are, and will be, of the upmost stringent standards.
GPs had no more warning than the general public that this was going to become a reality back in May, offering only a six-week window of opportunity for individuals to opt out, with a cut-off date originally of June 23 – now August 23.
While NHS Digital explicitly set forth their guidance on the programme, including a national opt-out policy, these communications were limited to NHS Digital online platforms and distribution to currently relatively unused waiting rooms. Consequently, GP practices felt the onus was on them to inform patients more broadly of the opt out option, at a time of extreme workload pressures and Covid-19 vaccination focus.
Doctor-patient confidentiality is almost sacrosanct, and the only occasions for disclosure of information outside of this relationship is either with the full understanding of the patient, as in the case of referral to external services, or where a patient is at credible risk of causing harm to themselves, or others. Transferring all medical information for all patients to third parties without opt-in consent is a huge contravention of the relationship between patients and medical services.
Confidence and consent
Presumed consent has some precedence in medicine; many of us will remember the cancelled ‘Care-data programme’ back in 2014 and the ensuing controversy surrounding its efforts to centrally collect GP recorded data. The lack of patient awareness and the lack of clarity around options for opting out of the data extraction were well acknowledged as a main cause for its demise, in spite of a national information campaign. Déjà vu?
Yet, on the other hand, the recent change to organ donation policy was met with overall very little protest. Perhaps this seems like a clear case of ‘greater good’ to most people, or perhaps it’s simply that it was well-publicised?
In this case, there was an accessible and achievable course of action for those who do not wish to have their organs considered for donation after death, and the organ donation service were clear that informal choices would still be accepted without question. Meaning that we, or someone acting as our next of kin, can just say no at the point where it becomes a possibility. There is also a clear and legal course for healthcare professionals to make ‘best interest’ decisions for people who are unable to make choices about their care and treatment.
Informed decisions on data sharing
With advance notice, planning, and with plentiful, accessible information about the change, many, even most people might be happy for their data to be used for large-scale public health planning. However, when our data is used without us being explicitly told, the boundaries of consent and confidentiality become blurred.
While for the GPDPR programme there is an online ‘national data opt-out service’² and you can also tell your GP that you do not want your data to be shared, this relegates the responsibility to the individual to be alert and savvy enough to advocate for their own rights. If the ability to opt-out is not accessible and universal, its ethics can be called into question.
There are vast numbers of people who do not or cannot keep abreast of current affairs; who are not digitally literate, do not use the internet, or perhaps have access to the required technology; who live in care facilities or other institutions, or who might have to rely on carers making or acting on these decisions for them.
Data saves lives and fuels innovation
Digitised health data means that we have more information than ever before which can be easily collated, identifying trends, health inequalities, and overall improving public health.
As long as provisions are made for everyone to make decisions about their own data, there is a clear case for data sharing positively informing public health decisions and playing a key role in planning and research, as well as in developing treatments. None more so than what has been evidenced throughout the course of the pandemic and what’s been learnt from the vaccine rollout, and the opportunities it could create for helping treat ‘long-Covid’.
There is no doubt we will all benefit from medical developments drawn from bigger, better cohorts of data. There are more than 60 million people registered with a GP in England³ alone. Large-scale digitised health information has already yielded compelling results, and from some unexpected sources – Fitbit and Strava have contributed information about public health for more people than any clinical trial could hope to accomplish.
Medical innovation based on the largest possible data cohort is undeniably a positive, and if this data can be collected and compiled in a transparent, informed, and consensual way, it is laudable and essential.
At Skills for Health we fully support wider collaboration across healthcare and the use of large cohort health data for public health planning and research, but only with full informed consent or appropriate advocacy for everyone whose data is affected.
NHS Digital’s recognition this week that more is required to prove maintaining patients’ trust is paramount to their efforts is encouraging. Now, the NHS will need to use the next two months to rebuild just that, trust. The success of the programme relies on it, if all groups of society are to be represented, and better care, better treatments and better outcomes are enabled for the UK population.
References:
¹National Data Opt-out – COVID-19 response – Further extension to 30 September 2021
²NHS Digital, National Data Opt-out
³NHS Digital, Patients Registered at a GP Practice – May 2021
