My transcription of the first webinar. I thought the chairman and speakers were top notch!
1st BMJ webinar on online records access 10/11/2021 [ https://www.bmj.com/company/webinars/ ]
Patient access to health records: Why is failure to give patients timely access to their health records a failure of medical ethics?
The first webinar was chaired by Harry Scowcroft and explored some of the ethical challenges, misconceptions and potential or perceived downsides to patients having access to their health records. The webinar also discussed frequent objections such as patient harm, loss of trust and diminished autonomy.
Charlotte Blease is a Northern Irish philosopher of medicine from Belfast, Northern Ireland. She is a healthcare researcher at General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston USA. Formerly she was a Fulbright Scholar to the Program in Placebo Studies at Harvard Medical School. Charlotte is associated with “Open Notes”.
Adam Hayden is a philosopher, writer, advocate, and organizer for the brain tumour community.
Hanife Rexhepi is a senior lecturer in informatics at university of Skövde, Sweden. Her research interests centre around the design, development and evaluation of computer-based health
Alex Kafetz is a nationally and internationally recognised expert on technology, healthcare data, and transparency. He has been in health policy in areas such as private/public partnerships, patient safety, NHS datasets, technology, digital services and information for over 20 years. In 2018 he was appointed by the Bishop of Norwich as an independent adviser to the Paterson inquiry.,
Harlan Krumholz, MD, SM, is the Harold H. Hines, Jr. Professor of Medicine and Epidemiology and Public Health at Yale School of Medicine in New Haven, CT, and is a practicing cardiologist. He serves as Director of the Yale-New Haven Hospital Centre for Outcomes Research and Evaluation and Co-Director of the Robert Wood Johnson Foundation, Clinical Scholars Program at Yale. He has led research and initiatives to improve the quality and outcomes of clinical decisions and health care delivery, reduce disparities, enable transparency in practice and research, and avoid wasteful practices.
Adam Hayden described his information needs from his first symptoms to final treatment of his 71 mm diameter brain tumour. “Clinicians need to listen to understand the experience of patients. Listening to stories helps open understanding after empathetic listening to others. Services had not been providing transparent access to his information.
Charlotte Blease believes ethics must be made central to the discussion of sharing records with patients. Medical paternalism still prevailed which shared records helped to diminish. Legal access through prolonged administration procedures had been available for 20 years but the cybersecure digital access had developed during the last few years. There were ethical duties for doctors of benefience, duty of care, duty to respect autonomy of the patient, duty to do no harm or minimum harm and duty of justice - equity of access.
Hanife Rexhepi asked if it harms patients to see their notes. Doctors do worry that patients will be upset but research finds that very few patients express anxieties when they see their records. Patients better understand their results and care plans. Approximately one in five patients find errors in their notes or wrong patient records in their notes.
Sweden has done extensive research on patient record access since 2013. Findings show that patients experience greater anxiety waiting for results than they do receiving them on their own but early.
Alex Kafetz was a part of the enquiry into the criminal errors and behaviours of Mr Patterson, a breast surgeon who falsely diagnosed breast cancer in order to operate on patients. He explained how patients stop hearing and stop receiving information when they receive very bad news. Records help to allow the patient to catch up on what they did not hear or ask questions about. Access to records also allows patients to share the records with extended family, caring organizations or friends to aid understanding and support.
Harlan Krumholz explained that for full autonomy patients needed to have access to or copies of all of their records. “No decision without me”. Patients should have full unfettered access to all clinical information in their notes. Some patients wish to share information, such as images, with other professionals for a second opinion. Right now, patients are impoverished for information.
The chair, Harry Scowcroft, moved the conversation on to perceived objections to patient access to records.
There had been some concerns about issues of trust and relationships - a concern that patient access tto records might lead to a diminished professional relationship. However, the opposite applied when studies were made of patient experience. “There was no greater threat than something going on behind the screens that patients no nothing about.” Research shows that even the invitation to share the records can improve trust of the doctor, especially for patients with lower literacy.
Evidence from Sweden also shows that though doctors are frightened that patients will lose trust in them if they make mistakes, patients trust doctors more who admit mistakes and who make visible efforts to prevent mistakes and to motivate patients to find errors or omissions. Evidence also shows that sharing the records with patients increases safety.
The discussion felt that the shared record changed the power structure of care giving joint “agency” to the patient. This was a unique agency for the patient to be self dependent. The “agency” given to the patient was a far more useful concept than giving the patient ownership. Ownership was complicate because of different international legal arrangements and also because of the complexity of handling multiple data sources and “toting all sorts of information storage types around the country.”
Adam described the ease with which patients inside of the health system could obtain their own data but patients outside could not, whilst data from 320,000,000 USA citizens was being sold willynilly without the patients’ knowledge or overview.
A secure API and training on passwords, portals and using tools are necessary for patient access to their data but, after that, patients can do just what they want with their data just as they can with their own money.
The Upsala Function - For correcting errors or omissions in notes that have been discovered by patients, patients can put comments on the notes that nurses and doctors can see. Who should see these comments and who should handle the conversation about the validity of the comments and the “correction” of the errors or omissions. There was a feeling that although this was a time consuming process, more time might be saved through the correction of errors, increased safety, less mistakes and less litigation.
Finally, on whether patients become confused by reading their notes, research of patients with oncological diagnoses only 4% reported being confused by reading their notes whilst 30% of physicians were found to think that patients would be confused by reading their notes. (Note from me: research elsewhere shows that doctors are poor at determining patients’ health literacy status.)
HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. 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