BMJ: Unintended consequences of open access to medical notes

9 July, 2022

This article may be of interest to HIFA members

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:o1570

I have attached Helen's article [and] responded as below: [*see note below]

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.

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 in the BMJ 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 [*see note below]

HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data

Email address: richardpeterfitton7 AT gmail.com

[*Notes from NPW, moderator:

1. HIFA does not carry attachments but the article is freely available here: https://www.bmj.com/content/377/bmj.o1570

2. I could not find a reference to 8 and 9 in the text.]