Adapting to transparent medical records: international experience with “open notes”
BMJ 2022; 379 doi: https://doi.org/10.1136/bmj-2021-069861 (Published 21 November 2022) Cite this as: BMJ 2022;379:e069861
- Charlotte Blease, Keane scholar1,
- Brian McMillan, NIHR advanced fellow2,
- Liz Salmi, communications and patient initiatives director1,
- Gail Davidge, research associate2,
- Tom Delbanco, professor of medicine1
- 1Division of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA
- 2Centre for Primary Care and Health Services Research, University of Manchester, UK
- Correspondence to: C Blease charlotteblease{at}gmail.com
What you need to know
By 30 November 2022, patients in England who have signed up for an online service such as the NHS App should have prospective access to their primary care health record enabled by default. Access includes GPs’ free-text consultation entries (commonly referred to as open notes)
GPs may have concerns about open notes, a practice that has now been implemented in several countries. To date, preliminary findings show that many reported worries disappear with experience.
Doctors can empower patients and themselves by implementing a number of techniques and practices in preparation for patient access to their notes.
By 30 November 2022, patients in England who sign up for online services such as the NHS App1 should have access to their full primary care health record prospectively and by default.23 Every new entry made in the primary care record will be immediately visible to patients, including the free-text consultation entries (commonly referred to as “open notes”). Clinicians are understandably concerned about this radical change in practice, fearing additional burdens for their work, an onslaught of calls or emails from anxious or confused patients, and potential risks to patients’ safety.45
With this change, the functionality of the clinical record is also evolving.678 No longer will the medical record serve primarily as an aide memoire or communication tool for clinicians, or as a billing device (as in the US), it will transform increasingly into a central form of communication among clinicians, patients, and, in many cases, their care partners. In this article, as a team of primary care physicians (BM, TD), a patient (LS), health services researchers (TD, BM, GD, CB), social scientists (BM, GD), and a philosopher (CB), we draw on ongoing qualitative work (by BM, GD, and CB) among primary care staff in England and combine it with evidence from countries where open notes are advanced (see table 1) to summarise concerns and offer suggestions for how clinicians may consider changing their practice.
Clinicians’ concerns about open notes and current evidence
Background to open notes
The move to share access to clinical records signals a more equal partnership between patients and clinicians. In adopting this innovation, England follows other countries such as Sweden and the US, where both experiences of clinicians, before and after patient access, and patients’ experiences with reading their notes have attracted scrutiny.383940 In England, since April 2019 the GP contract committed practices to offer full online access on a prospective basis to new patients—that is, from the date patients request it.41 Notably, by July 2022, 48.1% of patients had signed up for at least one service, but only 13.7% were able to view their detailed coded record.42 Information regarding the percentage of patients with full access to their records—including free-text consultation entries—is not publicly available, but currently the level of access granted varies and is a source of frustration for patients.43
Clinicians’ concerns
As movement towards transparency accelerates in different countries and health systems, surveys and qualitative studies show primary care staff share many questions about the practice of open notes. These concerns seem to cut across national boundaries and health systems.451044454647484950
Table 1 summarises concerns commonly raised by clinicians, and the current evidence for each of these. These findings come with several caveats. They focus on the perceptions of clinicians and patients who use open notes, and findings dependent on self reporting can be unreliable. The data draw primarily on small numbers of medical centres and hospitals, limiting the generalisability of the results. Moreover, the findings may over-represent respondents with positive or negative biases about patient access to clinical notes.
More robustly representative surveys and studies that include objective measures of the effects of open notes on documentation, clinician workflow, and patient outcomes have yet to emerge.235152 From both patient and clinician perspectives, many challenges and unknowns persist, and it will be crucial to learn more about the consequences of shared notes as more experience emerges. Notwithstanding the many uncertainties, there have been increasing calls for healthcare to follow other industries in offering consumer or client transparency. The NHS decision to increase transparency may also be influenced by the participatory design movement in the Nordic countries—often termed “the Scandinavian approach”—which emphasises the value of democracy and democratisation in digital design.5354
Recommendations to prepare for open notes
Drawing on earlier published recommendations, recent research, and patient and clinician experiences with open notes, we offer 10 suggestions to help GPs, the wider primary care team, and patients prepare for this change of practice.41355565758596061626364 Reviewed and informed by a panel of six patients (see “How patients were involved in the creation of this article”), these recommendations are designed to help physicians optimise the potential benefits of open notes and minimise their risks (see also box 1, a guide for patients, and box 2, what patients find helpful). In the future, undergraduate medical education, GP training programmes, and continuing medical education will likely cover this innovation. Brief educational interventions may also help clinicians and patients become more confident and comfortable with open notes.5556
A guide for patients before reading online medical notes
You may benefit from reading your notes. In studies, patients who read their notes reported feeling more empowered, more in control of their care, and working better as a team with their doctor.
Reading your notes may help you better understand your health. Patients also report that reading their notes helps them to remember their care plan, understand the reason for treatments, and to follow up on next steps.
To feel better prepared for appointments, consider reviewing your own notes before and after a GP appointment.
Clinicians sometimes use acronyms/abbreviations in notes. Here is a list of common terms [Insert a list of especially common standardised terms].
To err is human, and sometimes GPs make mistakes in records. We encourage you to check your notes for accuracy. [Insert advice on the practice’s protocol for communicating perceived errors, including who and how to contact the practice using digital and non-digital methods of communication]. By doing this you can partner with your GP to improve the safety of your care.
At times, you may feel anxious or upset by what you read. Feel free to decide not to read your notes.
People other than your GP, such as other clinicians or, in special circumstances, family or informal caregivers, may contribute information to your health record.
For your own privacy and confidentiality, we recommend that you adopt safe practices around password protections, especially on shared electronic devices.
Your practice is committed to maintaining patient information privacy, security, and confidentiality. However, you are in control and have the option to request your GP to switch off record access any time, if this is what you would prefer.
Share details with patients about any practice-initiated discussion aiming to increase understanding, and address queries by leveraging Patient Participation Groups.
Information should be available via leaflets and practice websites, and with hyperlinks to publications, where appropriate. Where textual communication might be an issue for some patient populations, guidance could be offered via sound podcast or infographic options.
What patients find helpful about open notes
“I think my notes are incredibly valuable, and I read most of them (but not all of them). I use my notes to remind me of what was discussed during a visit, and they often fill in details I missed. Sometimes I refer to my notes months later and have used them to settle disputes at home (‘What did the doctor say again?’). There isn’t a single thing in my notes I don’t understand or can’t figure out from context because I was there when the note was written. And now that I have been reading notes for a few years, I believe I have become a better patient because I can see myself through the eyes of my doctor.”—Liz Salmi, female patient, aged 43, USA
“I think most patients are more harmed by not being able to see their open notes. While it is not a primary care office that did this to me, I have been unable to see my original note from a surgery because the physiatrist [physical medicine and rehabilitation doctor] deemed me ‘too fragile.’ I appreciate that there are rare occasions when it may be important to hide notes from patients. However, for the most part, access is important to build trust, and I strongly believe blocking information is damaging toward the patient-doctor relationship.”—Female patient, aged 50, USA
“I have a good relationship with my GP, but I can see open notes being especially useful in two situations: when locums are employed, so that I can check they’ve understood my situation, and when I have a telephone or video conference call with a medical practitioner, and I can’t see what’s being written and miss some of the ‘unsaid’ cues.”—Female patient, aged 62, Northwest of England
“I was a bit disturbed to see what appeared to be an odd selection of entries to my medical record. My experience has been that the receptionist gives you titbits of information, and the patient has to piece it together. So, in general, I think this is a really significant positive change for patients.”—Female patient, aged 46, Northwest of England
RETURN TO TEXTEducate patients and staff about open notes
Inform patients that open notes can be empowering and can help them feel more in control of their health care.
Advise patients that, by actively reading notes, they may both clarify their health goals and partner more effectively with their doctor.
Suggest to patients that reading notes may foster greater understanding of the reasons for treatments and medications and help them, their family, and other care partners to remember and follow the next steps in their care plan.
Include links to patient information materials in the record that patients can read at home, such as https://www.bad.org.uk/patient-information-leaflets
Share information about open notes with practice staff, including non-clinical staff, who may require training in how to manage queries from patients.
Involve patients in what you write and create a shared plan of action
When possible, and providing there are no safeguarding concerns, turn the computer screen towards patients to show them what you are documenting, or offer to read aloud what you have written. Ask if there is anything they would like you to add.
To ensure understanding, if you cite a diagnosis in the notes, discuss it with the patient and, where appropriate, their care giver.
Incorporate into notes patients’ health decisions and their reasons for their choices.
Avoid directive language that may point to the role of an authoritative doctor; such as “Patient was told to…,” “I have instructed her to do…”
Use second person voice to reflect collaborative decisions; such as “We will work together as a team,” “We discussed…”
Use notes to celebrate patients’ strengths and progress; such as “Congratulated on stopping smoking.” When addressing areas in which patients may feel they are failing, balance the discussion with positive statements.
Write entries with empathy and sensitivity
Assume that patients read their notes, even if they do not discuss what they have read in consultations.
Avoid medical jargon or potentially offensive acronyms. For example, use “follow-up” instead of “F/U”; “shortness of breath” instead of “SOB.” Where available, use inbuilt software tools to convert acronyms to full text.65
Avoid references to patients that may be perceived as judgmental or offensive; such as “Patient non-adherent/complaining about/denied/stated/refused.”
Discuss or avoid potentially difficult terms. For example, for patients with obesity, omit or place that word in the context of body mass index and health risks, rather than as a sole descriptor that may be viewed as pejorative.
Avoid stigmatising or discrediting language, including reference to patients’ diagnoses or health status (such as “drug user”) or to their progress or demeanour (such as “he insists that,” “in denial,” “difficult patient,” “failed to”).
Explain that free-text entries serve multiple functions
Explain the multiple purposes of the medical record to patients.
Although patients will now read their notes, do not leave out appropriate differential diagnoses. Discuss your logic and sense of probabilities with them. Strive to ensure that patients are not surprised by what they read.
Encourage patients to ask about entries they may not understand.
Address risks and possible unintended consequences.
During consultations, talk about diagnostic possibilities with patients. For example, “It’s extremely unlikely that this is a cancer, but we wouldn’t want to miss it, so I’m adding it to my list of possibilities. It’s far down my list—it’s much more likely to be X.”
Discuss with patients the emotional risks versus benefits of reading their notes. Some may decide not to read them, thereby avoiding potential upset.
Talk to colleagues about best practice regarding safeguarding and confidentiality. Set up a protocol for practice staff to follow if patients report upset or anxiety.
Support marginalised populations
Do not assume more vulnerable or disadvantaged patients will not benefit from, or “handle,” reading their notes.
Consider what steps your practice can take to maximise accessibility and inclusion. For example, offer “How to get online” guides to the practice website. Work with local charities and patient participation groups to provide additional local support.
Offer help and advice about proxy access, safeguarding, and privacy
Advise adolescents and at-risk individuals about the importance of privacy and confidentiality.
Safeguard against revealing third party information by advising patients you can use a separate and hidden entry to record sensitive information they would prefer not to be visible in their online record.
To protect the privacy of their records, remind patients to adopt safe practices around password protections, especially on shared electronic devices.
Inform patients they can ask their GP to turn off open access, so that only their GP and other clinicians can view their record.
Offer advice and reassurance about maintaining privacy via the practice website, surgery posters, and in person.
Ask patients for feedback and manage disagreement at the earliest opportunity
Do not assume that, without active encouragement, patients will be comfortable offering feedback on perceived errors in the medical record.
Be open about the fact that errors and omissions can happen in records. Be proactive in encouraging patients to help spot errors so they can be rectified.
Create a practice protocol for processing disagreements.
If disagreements are not resolved, ask patients to work with you to document their view as an additional note. For example, “Discussed difference of opinion. [Patient’s name] would like me to note that…”6667
Remind patients to check their records before and after appointments
Encourage patients to review their notes before visits, both to refresh their memory and to be prepared to discuss any concerns.
Add reminders to do this via the practice website, surgery posters, and in person.
Incorporate reminders to patients to read records via GP phone messaging systems, and/or integrate such reminders into text messages about appointments.
Raise awareness of open notes
Do not assume patients know they can access their primary care records online.
The consultation is the most powerful place to inform patients about open notes.
Advise patients where they can learn more about the NHS App and other platforms they can use to access their notes.67
Adapt the illustrative patient guidelines to your practice (box 1) and adopt other methods to publicise online access via the surgery website, and by posters and leaflets in waiting rooms.
How patients were involved in the creation of this article
Six patients, including one who is a co-author (LS), helped in preparing this article. Reflecting combined feedback, we modified and expanded our list of recommendations for talking about and writing free-text entries, and we included box 1 (a guide for patients before reading online medical notes). Patients also offered their own comments on the paper, including their experiences and views of open notes (incorporated into box 2).
Education into practice
Consider how you might talk to patients about access to their clinical notes. Ask what else can be done to help patients prepare for reading their notes.
Reflect on how access could be used as a means of empowering patients and enhancing shared decision-making.
Acknowledgments
We thank the patients who contributed their experiences with open notes for this publication, and for providing feedback on an earlier draft of this manuscript.
Footnotes
Contributors: CB wrote the first draft. All authors contributed to subsequent revisions and approved the final version. CB is the guarantor.
Competing interests: During the development of this article, CB, TD, and LS worked at OpenNotes (www.opennotes.org), an education, research, and advocacy unit at Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA.
Funding: CB is supported by a John F. Keane Scholar Award. BM and GD are funded by the National Institute for Health and Care Research (NIHR Award ref: NIHR300887). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Provenance and peer review: Commissioned; externally peer reviewed.
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