Helen Salisbury: Unintended consequences of open access to medical notes
BMJ 2022; 377 doi: https://doi.org/10.1136/bmj.o1570 (Published 28 June 2022) Cite this as: BMJ 2022;377:o1570All rapid responses
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Dear Editor,
Information is central to the ambitions of patients' access to records. The paper "The view of a general practitioner on immediate access for patients to their laboratory test results (ref 1) was presented on behalf of Dr Amir Hannan at the European Federation of Laboratory Medicine In Mannheim, Germany in 2018.
Many of the principles of patient access to records and to results mentioned in the paper "The view of a general practitioner on immediate access for patients to their laboratory test results" come from three books “Clinical thinking and Practice”, “The New Consultation” and “The exceptional potential of each primary care consultation”. These books analysed the use of information processing within British General Practice consultations. Members of the Record Access Collaborative believed that these processes could be augmented through patient training, empowerment and access to and contribution to the clinical record.
The Record Access Collaborative led by Dr Brian Fisher (Ref 2) in England promoted a move towards open records. he Record Access Collaborative extended the use of medical knowledge and skills and practice of doctors to patients and their families through the use of digital and mobile media. Patients were encouraged (an important stage usually ignored by doctors) to undertake some care themselves but not abdicating responsibility and creating a communication and team hub through the common record.
Book 1: Churchill Livingstone 1979 "Clinical thinking and Practice" by HJ Wright and Douglas Mcadam (who I was trained by in 1977) has three parts:
Part 1- Who consults the doctor and why
1. The apparent and the real conversation
2. Consultation and disease
3. Consultation and illness
4. The doctor's contribution to consulting areas
5. Unreported disease
6. Unreported symptoms
7. Pathways to consultation
Part 2.
8. Context and methods (Contrasts between hospital and general practice)
Part 3. Diagnosis and decision making Collecting the evidence - selectivity
Selecting the evidence communication
Collecting the evidence the use of the examination
The interpretation of clinical data- symptoms and probabilities
The interpretation of clinical data- information, measurement and counting
The interpretation of clinical data- normality
Summarising clinical data: diagnosis, naming and classification
Book 2: The New Consultation: Developing Doctor–Patient Communication-
Rogers, 2004, Health Expectations, Wiley Online Library (https://onlinelibrary.wiley.com/doi/full/10.1111/j.1369-7625.2003.00263.x)
Pendleton, Schofield, Tate and Havelock – ‘The Consultation – An approach
to Learning and Teaching’
Pendleton, Schofield, Tate and Havelock published ‘The Consultation – An approach to Learning and Teaching’ in 1984. This is now widely referred to as the ‘Pendleton’ model of the consultation. It was updated and revised in ‘The New Consultation’ in 2003.
This model described seven tasks, which taken together form comprehensive and coherent aims for any consultation:
1. To define the reason for the patient’s attendance
2. To consider other problems
3. To choose an appropriate action for each problem with the patient
4. To achieve a shared understanding of the problems with the patient
5. To involve the patient in the management and to encourage the patient
to accept appropriate responsibility
6. To use time and resources appropriately
7. To establish or maintain a relationship with the patient which helps
to achieve other tasks
Book 3: 1) Stott NCH, Davis RH (1979).The exceptional potential of each primary care consultation.JRCGP,(29), 201-5. Stott and Davis outlined four areas which can be explored each time a
patient consults:
1. The identification & management of the presenting problem
2. Modification of the patient's help-seeking behaviour
3. The management of continuing problems
4. Opportunistic health promotion
References
Ref 1. "The view of a general practitioner on immediate access for patients to their laboratory test results (degruyter.com) (https://www.degruyter.com/document/doi/10.1515/cclm-2018-0743/html)
Ref 2. The record access collaborative was developed as a service to the public, patients, the NHS and industry. The aim was to bring together those who have an interest in seeing record access more widely available and maximising benefits that flow from it. The NHS had made a clear statement of principle that patients should be able to access their records, subject to legal safety restrictions. There was good evidence of substantial benefits for patients. The aim of the collaborative
- to raise awareness of record access (RA) nationally and internationally
- to make RA as useful to patients as possible by linking data to facilitate understanding and empower patients to share decisions if they want to
- to increase the take-up of RA by patients and practices
- to support the development of national standards for RA.
Competing interests: No competing interests
Dear Editor
Helen Salisbury is correct to predict that mistakes will occur from shared medical records. Training for all health and social care staff and students about writing records that can be shared with patients should be mandatory. Third party data, safeguarding, adolescent records all need special handling. We are doing our best to encourage all medical schools to include education and training on these issues.
However, mistakes already occur very frequently through poor and incomplete records, and our ERDIP studies in 2000 (1, 3) and recent American studies (2) show that 20 to 30% of patients find errors or omissions when they view their notes. The Ombudsman report on medical complaints in 2015 showed that a third of complaints were caused by poor communication. (4)
Helen is also correct to write that patients wish for explanations and that time is too limited to provide full explanations (though providing full information for patients is advised by the GMC (5) )
Patients do want to see their notes and our evidence suggests that patient access to records saves time. (6) Patients also use their notes to find explanations and to navigate their own care pathway. (7, ) as written by Oliver Crowton in the BMJ responses in 2017: (7)
"I have found that access to my medical data, including test results, consultation details, diagnosis history etc. has empowered me as a patient and given me a platform for the sort of communication with my healthcare professional that Person Centred Care appears to seek to achieve. I ask questions, discuss options for treatment and associated side effects, as well as assisting with the management of my regular scheduled treatments. I am able to feel a better level of care with less contact with the surgery. I can manage prescriptions and view test results without the need to take up time talking to the surgery staff. I can review treatment dates to ensure that my blood tests and treatments are scheduled appropriately without the stress of wondering when they are due. The access to EMIS has allowed me to take some ownership of my condition and work pro-actively with my various healthcare professionals in the management of my disease and its treatment both short and long term.
I have no doubt that I would not have had the confidence required to begin discussions with my doctors without the access to my records as a basis for communication.
I find the quarterly visits to my Consultant at hospital are also now far more useful. I am able to discuss the results of my GP surgery visits and test results and draw directly upon them at the consultation from my smartphone if required, adding depth to our discussions.
In short I am no longer a passenger, I am now very much part of the management team for the effective treatment of my condition and I am pleased to say that I am managing to remain in good health."
1. https://api.parliament.uk/historic-hansard/written-answers/2002/feb/01/e...
2. In a study published last year in JAMA, Sigall Bell, MD, of Beth Israel Deaconess Medical Center in Boston and colleagues surveyed patients who were asked to access their notes from any of three heath systems. The response rate was a low 21.7%, but 21% of those who did read their notes saw a mistake, and 42% of them thought the error was serious.
3. “Sharing electronic health records: the patient view.” Informatics in Primary care 2006 14.55-7 British Computer Society, Dr John Powell MA Bchir MSc PhD MRCPsych MFPHM, Caroline Fitton Temporary researcher, Dr Richard Fitton MB BS MRCGP DCH DRCOG
4. https://www.ombudsman.org.uk/news-and-blog/news/new-report-sheds-light-t...
5. Guidance on professional standards and ethics for doctors Decision making and consent November 2020
6. The impact of patient record access on appointments and telephone calls in two English general practices: a population based study London Journal of Primary Care 2014;6:xx–xx # 2014 Royal College of General Practitioner
7. Editorials Implementing person centred approaches BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j4126 (Published 11 September 2017) Cite this as: BMJ 2017;358:j4126
8. Accessing personal medical records online: a means to what ends? Syed Ghulam Sarwar Shah, Richard Fitton, Amir Hannan, , Brian Fisher, Terry Young and Julie Barnett International Journal of Medical Informatics
9. Clin Chem Lab Med 2019; 57(3): 375–38
Competing interests: No competing interests
Re: Helen Salisbury: Unintended consequences of open access to medical notes
Dear Editor
This is a timely article. Helen Salisbury admirably confesses to filing laboratory results just out of normal range as satisfactory. This is an established culture. All GPs must do this. Of course our own self generated reference ranges are quite arbitrary and likely vary a bit. However, extending reference ranges or ignoring indices which traditionally mean little like the MCHC, is one of the many little techniques which make GP work. However, explaining why you ignored a red result to an anxious, motivated patient can be disproportionately stressful. Indeed if such a patient becomes more motivated and makes a complaint the disproportion can escalate. And small numbers of such issues can be another nail in the coffin of a GP remaining motivated as they struggle with lots of similar issues.
The flip side of this is that the patients challenging the ignoring of such results may be revealing an inappropriate culture.
Why do labs still report indices that almost all GPs ignore?
And if you think this to conclusion, with the variability of laboratory processes, that means an abnormal might be normal, and the corollary is that the normal might be abnormal. So really all results only mean something if they are repeated perhaps 3 times with 3 normals with no worrying trend, reducing the probability of this representing pathology to an acceptable near zero figure.
I’m being silly but this stuff for some GPs is just a straw on to the camel's back.
Competing interests: No competing interests