Patient start recording visits

In 2014, I wrote a short article in The BMJ called “Patientgate—digital recordings change everything” [1], where I argued that the arrival of smartphones and their capability to easily record clinical encounters would be a route to better quality healthcare. Patients put a very high value on being able to listen again to their visits and to share them with family members and others, and this is being confirmed by more studies [2,3]

What has changed since 2014?

Since that time, significant developments have taken place. First, and most critical from an adoption perspective, a number of organizations have embraced the concept of recording encounters, and are promoting the idea that patients should either be recording their visits or are providing patients with the means to access recordings [4,5]. The number of organizations that use different methods to support patient access to recordings is increasing because they view the process as a positive way to provide high-quality patient care [4,5].

Secondly, an increasing number of companies have been established who provide patients (and organizations) with technology designed to make it easier to record, store and access recordings of clinical visits. Some are going beyond just capturing and storing audio. For example, some apps provide access to the entire recording and use machine learning to create immediately accessible transcripts of medically relevant highlights from the conversation so that people can pinpoint what they wish to share or recall at a later time. Naturally, when downloading third-party software to their smartphones, users will want control over their data: what to store and what to share. Users will also wish to have power over what to delete and what to archive. Whether or not users can be assured that the algorithms are safe and of sufficient quality, remains to be seen.

Clinicians remain concerned

However, clinicians remain hesitant and are often concerned, and there is no real evidence that this reaction has changed substantially [6]. As noted by Joshi [6], clinicians feel that patients’ recording consultations is a threat, that they would be intimidated, inhibited, and feel less willing or able to give their best advice. They also cite concerns about recordings being posted to the web or on social media, exposing them and others to various data security breaches. Nevertheless, as Barr noted [5], more and more clinicians are becoming aware of the fact that patients are recording, either with or without permission and perhaps, over time, the hesitancy will either diminish or more likely, organizations will increasingly view giving patients access to recordings as part of standard practice. 

The law

The patient’s right to record is very real. The law permits patients’ recording in the UK, and indeed, the medical defense societies suggest that clinicians assume that recording may be occurring in every visit. Forward-thinking hospital systems in the US are now starting to encourage patients to record their encounters. This is occuring in places such as Pittsburgh, Boston, and Phoenix, to name a few locations. At the same time, some hospital systems in the US have issued notices banning patients from recording, unaware of the wiretap laws that in 40 states allow the patient alone to decide whether they want to record their visit [7]. 

Evaluation

Digital recordings provide unique access to interactions that have previously been the sole domain of communication research studies. As Ryan proposed, the range of possible uses of this data is vast [8], and work is underway. Academic groups－such as my colleagues at Dartmouth College [9], and groups in Australia [10]－have started to explore what additional features could be offered to stored digital recordings of clinical encounters, such as labeling key sections or giving links to evidence-based information when keywords are identified. It is possible, though not proven as yet, that when being recorded, clinicians would pay more attention to what they say and how they say it. Alternatively, it is also possible that recording that is initiated by patients will adversely affect clinician-patient relationships, initiate defensiveness and fears of providing helpful if speculative advice lest it lead to litigation.

Research and regulation

As policy lags behind the pace of technological innovation and societal norms, regulators will need to consider issues around data security and secondary use. For example, the U.S. rules about data protection based on Health Insurance Portability and Accountability Act (HIPAA) do not apply to data collected by patients themselves, or by third parties that are not considered to be  “‘covered entities”’. Furthermore, the laws around recording consent and data security, dating from the 1950s, are woefully out of date.

But at a time when patient demand for improved access to their personal data is increasing [11] it is tantalizing to think about how an organized, summarized, curated series of digital recordings might align with the person-centered healthcare system of the future. Not only is more research required, but we also urgently need new ethical frameworks on how to govern such data [12].

Asking for, and receiving recordings (summarised or not), empowers patients [2] and makes it much more likely that clinicians will be kind and careful [13]. The future of medical practice, like so many other areas, will be transformed by that small device we now carry around.

See also: My patient wants to record our appointment, what should I do?

Glyn Elwyn, professor, The Dartmouth Institute for Health Policy and Clinical Practice

Competing Interests: Glyn Elwyn is Editor-in-Chief of the Option Grid tools produced by EBSCO Health, an adviser to PatientWisdom Inc, and the Chief Clinical Research Scientist for Abridge AI Inc, a developer of an app that allows patients to securely record, transcribe, and share health recordings.

References:

1. Elwyn G. “Patientgate”-digital recordings change everything: Patients’ recordings of consultations are a valuable addition to the medical evidence base. BMJ. 2014;348. doi:10.1136/bmj.g2078
2. Elwyn G, Barr PJ, Grande SW. Patients recording clinical encounters: A path to empowerment? Assessment by mixed methods. BMJ Open. 2015;5: 8.
3. Tsulukidze M, Durand MA, Barr PJ, Mead T, Elwyn G. Providing recording of clinical consultation to patients – A highly valued but underutilized intervention: A scoping review. Patient Educ Couns. 2014;95: 297–304.
4. Barr PJ, Dannenberg, Ganoe C, Carpenter-Song E, Haslett W, Das A AR, et al. A Case Study of U.S. Clinics that Routinely Offer Patients Recordings of Clinic Visits.
5. Barr PJ, Bonasia K, Verma K, Dannenberg MD, Yi C, Andrews E, et al. Audio-/Videorecording Clinic Visits for Patient’s Personal Use in the United States: Cross-Sectional Survey. J Med Internet Res. 2018;20: e11308.
6. Joshi A, Farberov M, Demissie S, Smith MC, Elwyn G. Attitudes of Physicians to Recording Clinical Encounters: Responses to an Online Survey. J Gen Intern Med. 2019. doi:10.1007/s11606-019-05127-y
7. Elwyn G, Barr PJ, Castaldo M. Can patients make recordings of medical encounters? What does the law say? JAMA – Journal of the American Medical Association. 2017;318: 513–514.
8. Ryan P, Luz S, Albert P, Vogel C, Normand C, Elwyn G. Using artificial intelligence to assess clinicians’ communication skills. BMJ. 2019;364: l161.
9. Barr PJ, Dannenberg MD, Ganoe CH, Haslett W, Faill R, Hassanpour S, et al. Sharing Annotated Audio Recordings of Clinic Visits With Patients-Development of the Open Recording Automated Logging System (ORALS): Study Protocol. JMIR Res Protoc. 2017;6: e121.
10. SECOND ears: Development of an audio-recording app for patient consultations. In: Peter MacCallum Cancer Centre [Internet]. 1 Jun 2016 [cited 6 Sep 2019]. Available: https://www.petermac.org/research/SECOND%20EARS
11. Esch T, Mejilla R, Anselmo M, Podtschaske B, Delbanco T, Walker J. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open. 2016 Jan 29; 6 (1): e010034. doi: 10.1136/bmjopen-2015-010034.
12. Harari YN. Lessons for the 21st Century. London: Spiegel & Grau; 2019.
13. Montori V. Why we revolt. Rochester: The Patient Revolution; 2017.