With the recent announcement from NHS England that all patients within England will have access to their prospective (future) medical records from November 1st 2022, there has been quite a debate as to what this means for patients and GP practices. What does it really mean!
Patient Access to Medical Records has been available to all patients registered with an NHS GP from 2015 and has started to become contractually relevant from April 2019. This access allowed patients to request access to their records and the GP practice would review the record and provide access as per a process agreed within the GP practice. Some areas have historically supported their local areas with guidance on this.
This contractual agreement was discussed and agreed with the BMA in 2019 that ensured that access would be subject to appropriate safeguards that included that:
- access to records do not cause harm to the patient
- legal confidentiality obligations for the non-disclosure of third-party information are adhered to
- if based on clinical judgement, it is considered that some information could be harmful to the patient, this information should not be shared with them
- information can be redacted from the patient view and must not be deleted from the record
There was also discussion in 2020 to allow retrospective access to records and this document from NHS England specified on page 53 that patients should have online access to the full historical digital record on request and that NHS England would “look at how third-party redaction software could be made available to general practice”.
In 2021, NHSx indicated that it wanted to allow patient access to the medical records from December 2021 but was delayed after concern from the BMA about concerns raised on the impact on patients and doctors until April 2022. It was then further delayed in March 2022 due to “safeguarding concerns” with a plan go live for July 2022.
It was then announced in July 2022 that due to “safeguarding concerns” this would be further delayed and on July 21st NHS Digital published a letter stating that from November 2022 patients will be able to have automatic prospective access to their medical records. Retrospective access would remain at the request as per existing guidance currently. The prospective online access will include all data including free text and documents.
NHS Digital have not specified what the “safeguarding concerns” would have been and transparency around this would be welcome.
There have however been several issues raised around the process of patients having automatic online access to their medical records without any acknowledgement of the challenges that practices will face.
There has been the ongoing concern about redaction flags not transferring between clinical systems on GP2GP so that parts of the clinical record marked confidential by one practice is not transferred to another creating additional workload for the new practice to review the notes if retrospective access is requested.
A template Data Protection Impact Assessment (DPIA) has been provided but there has not been any support for GP practices to complete this with the current expectation that each practice does it’s own DPIA.
Even though NHS Digital’s own guidance dictates that the DCB0129 and DCB0160 need to be “adopted in all circumstances where ‘digital products’ are developed or deployed to support health or social care services”, the NHS App itself has no such clinical safety document that is publicly available and the closest to a clinical safety risk is for the NHS Digital service desk to be informed of any clinical risk.
In addition, the NHS Digital letter referenced that commissioners should provide a training service for practice staff to support the safe and effective use of clinical systems and national digital services and that GPs should contact their commissioners in the first instance. The need to do this was also referenced in the Primary Care (GP) Operating Model. This has become even more challenging given that the digital and IT funding has been cut from local budgets given to newly formed Integrated Care Boards (ICBs).
So, on balance, existing mechanisms do allow patients to access their online medical records but require a workload commitment to review retrospective data before access and it is welcomed that the automatic access will be prospective. But there are quite a few concerns around the implications to enabling practices to fully understand, engage and implement the training and processes to ensure that prospective data is coded and redacted appropriately.
There is good support on redacting online records that the RCGP have put together although they do stress that this needs to be done before historical records have been switched on which needs to be supported as the inevitable step of allowing prospective access is that patients would also want to request retrospective access.
There are a new set of SNOMED codes that can be applied to patients record to prevent the release of data to be automatically released although these need to be in place before the patient requests access.
Looking at learning from early adopter sites, there are some recommendations to code patients cohorts that may require a review before granting access automatically. Looking at the lessons learnt, this should be published and endorsed by NHS Digital to mitigate any future risk.
If the national direction is to implement this access from the 1st November 2022, we ask that the following points are addressed:
- There is robust training that is provided to ensure that ALL GP practice staff are aware of the changes and have implemented and put in processes to ensure that prospective data is entered in a way that does not have any 3rd party information or entries that may cause harm.
- All clinical systems have a process of redaction built into the workflow of all document and pathology processing.
- From the lessons learnt from early adopter sites, the published recommendations for redaction are shared and openly publicised.
- To address to concern of increasing workload, there is a meaningful dashboard agreed and published to show the number of patients requesting prospective and retrospective access to online medical records.
- That before any legislation or directive for retrospective data is made, the third party redaction software that was promised in 2020 is provided to every GP practice on an ongoing basis that is funded centrally and equally.
- NHS Digital publishes the clinical safety documentation, including the DCB0129, in a timely way including data flows, a hazard log and safety case.
- NHS Digital supports GP practices in developing the DCB0160 as per NHS Digitals own guidance.
Do you agree with these 7 steps to success – or would you add any other?
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