Helen Salisbury: Whose record is it anyway?
BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m753 (Published 03 March 2020) Cite this as: BMJ 2020;368:m753
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Dear Editor,
Whose record is it anyway? The patient's record of course. We are merely custodians of their personal confidential data. We are the controllers, they are the data subjects. But it is their information, not ours.
Our patients have long had the right to obtain a copy of their medical records (albeit, strictly, personal data about them as held by us). Under the Data Protection Act 1998 they could request this for a fee, under the Data Protection Act 2018 for free, as a data subject access request (DSAR).
Whilst they have that right, we have the responsibility, as the data controller, to ensure that - where the law requires and/or permits us to - we do not disclose certain information to the patient, whether requested formally under a DSAR or via online access. For example, we have the right to withhold information that consists of personal data about another person, information that would be likely to cause serious harm to the physical or mental health of the patient or any other person, and information subject to a court order, human fertilisation and embryology legislation, adoption legislation, special educational needs education and parental orders legislation.
"Fear of upset" - whether in screening the record for online access or for a disclosure under a DSAR - is not a lawful exemption. The bar for "serious harm" is high.
Yes, every record will need to be read and redacted before full, retrospective online access is granted. As the record needs to be read and redacted before a DSAR for the full GP medical record is upheld and provided. There is no difference, and one way or another a patient who wants to see their medical record will get to do so.
If the surgery is concerned about coercion, and the consequences of it in a domestic violence setting, then the surgery has the right not to grant online access at all. That fulfills the "serious harm" test.
Long gone are the days (I hope) when GPs record comments such as "funny looking kid", or "troublesome patient", or "all these symptoms are supratentorial", and rightly so. I want my thoughts, my observations, my concerns, and my suspected diagnoses to be recorded (and they still will be) but equally shared with the patient. We cannot continue to maintain the trust of our patients if they feel that we are hiding things from them. It may take a careful and sensitive discussion with the patient to explain that some of the blood tests are looking for the presence of a serious disease, such as cancer, or that I don't exactly know what's wrong with them, but here are some of the things it could be and - yes - cancer is on that list, albeit low down that list.
Trust is everything. Just ask Amir Hannan (
https://www.mirror.co.uk/news/uk-news/gp-who-took-over-harold-21405506 ).
Competing interests: No competing interests
Dear Editor,
Surely the important aspect of the change in accessibility of medical records mentioned by Helen Salisbury is that they will be accessible online. Patients have been able to apply for hard copies of their records for more than 20 years because of the Data Protection Act 1998.
I have done this myself, although I was surprised to discover that I appeared to be the first person to do this for the purpose of constructing an academic illness narrative; mine recounted my own experience of diagnostic delay in axial spondyloarthritis.
I would be delighted to hear about anyone else who has used their own medical records for academic research.
Competing interests: No competing interests
Re: Helen Salisbury: Whose record is it anyway?
Dear Editor, Modern techology allows the immediate sharing of data worldwide. During our research of patient access to records with Oxford University in 2000, we took legal advice about the consent processes that were best suited for asking patients if they would like thier records to be made available to them. We inluded a consent form which we maintained within the medical record. This included a questionnaire which acted as a consent form. Patients were informed about the means of sharing the record with them and they were asked what they would do if they found out that they had a serious condition when they were on their own, if they found notes about some one else in their notes, if they found inaccuracies in their notes and to consider whether they were in a coercive relationship that might leave them at risk of suffering from their record being available to an abusive partner or family member.
I believe that it is necessary to make explanatory information to all members of the training and practising medical, social and nursing staff and to the public of the United Kingdom to allow them to decide how to respond to this new culture and technology of transparency.
Patients are the only people who attend every clinical procedure that involves and in the best place of all parties to make sure that their record is accurat and up to date. It may be of interest to note that the MDU annual report three years ago and the report of the national ombudsman stated that between 30 and 40 % of complaints in the NHS were related to poor communication. It has been my hope and experience that sharing records recuces the chances of mishaps and complaints.
Competing interests: No competing interests