Last week, Patients Know Bests CEO, Mohammad was invited to the second BMJ webinar on the Patient Access to Records Series exploring “What are the cultural and professional barriers to implementation?”. The full video is below, along with a transcript summary provided by Richard Fitton.
Richard Fitton is a retired family doctor an active member on the Healthcare Information Forum for All, where his transcripts and summaries of other webinars, as well as his wider contributions can be found.
The remaining two webinars in the series, health inequalities (Weds 24th Nov) and the technical, legal and governance issues (Weds 1st December) can be registered for via this link.
17th November 2021 17.00
2nd BMJ Webinar Patient access to records
“What are the cultural and professional barriers to implementation?”
The hearts and minds issues from both the public and clinical perspectives. What training/assistance needs to be made available to members of the medical profession and members of the public to improve access? Plus concerns about confidentiality, challenges around governance and paternalism.
Chair Emma Doble, Patient Editor, The BMJ
Main presenter Wajid Hussain was appointed as consultant cardiac electrophysiologist at the Trust to facilitate the expansion of ablation services, particularly in atrial fibrillation.
Dr Hussain is the clinical governance lead for the arrhythmia care group at Royal Brompton and Harefield hospitals. He has a particular interest in the safety and success rates for ablations and pacemakers and regularly leads audits to improve these measures.
In 2019, Dr Hussain was appointed clinical director for digital health at The Royal College of Physicians (RCP), where he is responsible for helping deliver new advances in healthcare through modern technology to improve patient outcomes.
Ken Masters: Sultan Qaboos University | SQU · Medical Education and Informatics (College of Medicine and Health Sciences) PhD
Angela Coulter is an associate member of the Health Services Research Unit special interests in patient experiences and outcomes. A social scientist by training, she has higher degrees in health services research from the University of London and the University of Oxford. Her previous roles include Chief Executive of Picker Institute Europe, Director of Policy and Development at the King’s Fund, Director of the Health Services Research Unit at the University of Oxford and Director of Global Initiatives at the Informed Medical Decisions Foundation. She is an Honorary Professor at the University of Southern Denmark, an Honorary Fellow of the Royal College of General Practitioners and a Non-Executive Director of the National Institute for Health and Care Excellence (NICE).
Dr Mohammad Al-Ubaydli, CEO and Founder Mohammad is founder and CEO of Patients Know Best. He trained as a physician at the University of Cambridge; worked as a staff scientist at the National Institutes of Health; and was a management consultant to US hospitals at The Advisory Board Company. Mohammad is the author of seven books, including Personal health records: A guide for clinicians and Streamlining Hospital-Patient Communication: Developing High Impact Patient Portals. He is also an honorary senior research associate at UCL medical school for his research on patient-controlled medical records. In 2012, he was elected an Ashoka Fellow as a social entrepreneur for the contributions he has made to patient care.
Wajid’s presentation: It is crystal clear that patients have a right to access their records. Patients find it difficult to do so. From December there will be a service for GP EHRs to allow patients access to their records in England. Different patient portals show disparate views. There are different systems and opinions for the timeliness of sharing records with patients.
Many doctors feel that patients won’t understand the records. Other doctors feel that patients will become anxious when seeing their records. Multiple studies in varied clinical fields – maternity, prostate cancer, hip replacement, diabetes, primary care and others show that most patients are less anxious when they have seen their records and more anxious when they are waiting to hear the contents of their health care deliberations. Other doctors fear litigation and liability and have worries about information governance. (The USA and Norway were mentioned) However patient access to records is happening around the world, now and there is a divergence in the types of doctor/patient relationships around the world.
In Israel it was noticed that patients who spoke English were more likely to read their own notes. There is and will remain inequity in access caused by many factors – as for any other technological solution.
How soon after creation should patients be able to see their notes? Should they be able to see the results and notes as they are produced, after the doctor has seen them or later?
Can patients understand their records? Patients report that they can understand their records. Evidence shows that accessing records helps patients remember and it is important not to confuse patients. It is important that face to face consultations and video consultations continue. Doctors should write legibly, avoid abbreviations, write understandable notes and proof read what has been written. Wajid believes that patient access creates slightly more work but achieves higher standards of care.
Questions and answers:
At what stage in the care pathway should notes be shared? Immediately, in between consultations, two weeks later, or never were theoretical options. Some patients want to see their records and results as soon as possible and some patients want to wait till they return to see the clinician. We have to trust patients and treat them as autonomous adults. Patients can decide for themselves whether they wish to see their notes and results.
Should a patient find out they have motor neurone disease when on their own? The patient would have been informed about the test beforehand and would have been asked how and when they wanted to receive the results of the test.) Support through the notes, face to face or by other means would need to be available. As for normal good clinical practice.
It is not suitable to consider giving only good news to patients and patients should be informed of the types of information that they might receive through record access.
Patients with mental health issues. Service providers to patients with mental health issues were more reluctant to share records with patients than service providers with only physical health service provision. Some granular records allowed mental health data, sexual health data, social care and general halth data to be separated from views except by approved service providers.
What does giving access to the records do to the doctor/patient relationship? Mohammad gave an example of a patient who was sent a scan result that the doctor was happy with the report bas the report did not show a suspected dissected aorta. However, the patient spotted the radiology comment hat he had a shadowed thyroid. “What is a shadowed thyroid” the doctor was asked and investigations were undertaken preventing a missed opportunity to make an unsuspected diagnosis. This dynamic of shared records means patients and clinicians work together as a team. They become partners in the care pathways’ execution. People who may live with long term conditions for 30 or more years can use and share their data across services. One of Wajid’s patients who had abnormal renal function tests showed Wajid normal patient renal function tests from two months ago on his phone.
Patients’ safety and Mistakes. All clinicians (and patients) make mistakes. Providing patients with access to their records creates an equal opportunity to rectify mistakes and to spot omissions. Safety is definitely improved in Wajid’s view and Ken violently agreed especially when patients with record access moved from one service provider to another. Angela described how an incorrectly entered height in her daughter’s notes was corrected.
Patients controlling access by service providers to views of their records. Ken would like to see this occur more as would others in the conversation. The patient almost acted “as USB memory Stick” with or without access as doctors expected patients to tell them everything about the past patient history when in fact no patient can do perfectly without a copy or access to the record.
What should happen next?
All panellists agreed that record access was not happening as much or as well as it should. Angela said that doctors did not understand what could and what could not be shared with patients. Angela benefits from seeing the details of her ophthalmic surgeon’s results, appointments and dates. She looks at the results to see how she is progressing. At one time she could see her hospital correspondence (which often is not copied to her). The practice, when pushed, said that the GDPR had prevented the communications from being shared sharing because of third party data. (Software packages have been used to prevent third party data being shared). The GDPR is interpreted differently in different countries. Practices in this country seem to be scared to share records finding reasons for not doing so whereas other countries “share everything”. “The UK services see the data as service data and not for the patient benefit”.
It was commented that patients could access and use the data from their own bank accounts without the banks worrying about clients being upset.
Education and training Mohammad explained that medical students were not generally taught about patient access to records – with exceptions. Leicester University had 5 years’ worth of graduates who had been taught about record access by patients. 1350 students had passed through the system to be practising record sharing doctors. Patient Knows Best has software that can be used for teaching record access by patients and is happy to make this free for use by medical schools and students.
Ken Masters has considerable experience of teaching students about patient access to records. The subject was gradually introduced during e-patient discussions and students were becoming more used to the practice. One student recently asked “why was this being taught – it is so obvious?” Ken has found students understand better if they are suggested that they could only get information about their course by going into the admin office or in paper posted format.
How did panellists feel about patients granting access to their own records to clinicians? Mohammad felt that we should give patients the tools and rights to do this but not to burden patients with the responsibility if they did not want it or could not undertake it. For emergencies when patients are too unwell to grant access there has to be an alternative access system even for patients who wish to grant access rights.
Patients seeing the audit trails of access to their records. All panellists seemed to be happy with this suggestion and it was confirmed that this facility already exists in many health records. Mohammad had met patients in Washington who wanted to see access audit trails to check that some one had looked at their record when they should.
Wajid said “we need to make progress. Push through the obstacles – a social movement.” Angela said that ”we should sell the idea to patients”. A check of an NHS survey had showed that only 7% of patients had accessed their records. “No-one was explaining or encouraging record access to patients”. Mohammad stated that although 90% of GP record systems had the facility for patient access only a minority of patients have been told about it.
Ken made the final comment. He had looked at some footage of outdate practices from the 1950’s and wondered how they had managed then. He had reflected that “if people could look back at this webinar conversation in 50 years’ time, they would wonder how it was that we clinicians and patients were still only talking about patient access to their own records.”