Patients’ Access to Their Records: What is the Right Timing?

This week I attended the Medical Informatics Europe (MIE) conference in Gothenburg, which took place together with the Swedish eHealth conference Vitalis. Most of the talks at Vitalis were given in Swedish, but there were a few exceptions. One seminar was given by Dr. Jim Bender who practiced Internal Medicine and is now the Hospital Medical Director of Virginia Mason Medical Center in Seattle. In his talk “Opening the medical record and sharing clinical decision support in pursuit of the perfect patient experience”, he shared their experience with opening up the medical records to patients via OpenNotes. According to him, this was delighting for patients and care teams and doctors also discovered that it made their job easier.

Receiving Bad News

Similar to our research, healthcare professionals in the US were also concerned that patient might get upset or anxious, and might receive their “bad news” through the system. According to Dr. Bender, this has indeed happened, although quite seldom. He added, that this might not necessarily be a bad thing though. He said, when he would call a patient to give them the bad news, they often cannot take it all in and don’t really remember what was said. He experienced that although patients might read the bad news online, when they then call they are much more able to listen and to have a talk about the next steps. After his talk, I asked him when exactly patients can read their results. Dr. Bender answered that they can see them as soon as they are signed by the doctor, and if not signed (depending on which type of data) after 24 or 96 hours the latest. He then added: “It’s the patient’s results; who am I to keep it?”

It may also be the case that the thread of patients receiving bad news through a patient portal is compared to an idealized version of “breaking bad news”. In an ideal world, patients receive the bad news in a face-to-face appointment with their trusted physician. However, in our survey to patients in Sweden, some commented about current practices. For example: if you get a call that you have to get to the hospital immediately, you might not technically receive the news on the phone, but you basically know that this is probably bad. In a study by Rexhepi et al. (2016)¹, a patient who had chosen to be informed on the phone stated, that patients should in general be the ones to decide how they want to be informed. Another patients outlined the positive aspects of reading about bad news online before meeting the physician:

I’d rather sit and cry at home and fix myself in the head so I can get back on track, rather than sitting in front of a doctor, shocked without the ability to ask questions”

This is in line with what Dr. Bender had experienced with his patients. Another patient in the study by Rexhepi et al. mentioned, that it was much more difficult to wait than to read the diagnosis through the patient portal.

Timing it Right

The question, when patients could see their notes and lab results was heavily discussed also in relation to the Swedish nation patient portal 1177.se. Many healthcare professionals preferred rather a delay of 14 days and/or to give patients only access to notes they had signed (i.e., approved). Within the DOME consortium, the timing aspect was investigated further and presented at MIE by Maria Hägglund. The paper is called Timing It Right – Patients’ Online Access to Their Record Notes in Sweden (open access)², and was written by Maria, Jonas Moll, Rose-Mharie Åhlfeldt and Isabella Scandurra. Maria presented parts of the Swedish National Regulatory Framework, that in its first version determined that the region or healthcare provider can choose whether or not to give immediate access or access to signed/unsigned notes. The framework received an update and now it states that all residents older than 15 should have access to all health-related information by 2020. Maria also presented the patient perspective in her talk: What do patients think, how long is reasonable to have to wait after a visit before they have access to their records? 51% of the respondents in the national survey (1299 out of 2539 patients) chose the option “after a day”, although this would mean that the healthcare professional may not have seen or signed the notes yet. In addition, the vast majority (89%, 2256) strongly agreed that access to their records through the PAEHR system is good for them.

The question: What is the right timing? is not easy to answer. Right timing for who? I think that especially patients with chronic conditions want to have timely access to records and lab results for example. Healthcare professionals are constantly overworked and there is a risk that some results might be overlooked due to stress. Patients might be able to spot an usual increase in blood values for example. On the other hand, physicians might prefer to discuss certain results face to face, after they collected all relevant information. However, as Dr. Bender said: It’s the patients’ results. So maybe they should determine what is the right timing for them?

Feature image by Andrew Seaman on Unsplash

1. Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å., & Huvila, I. (2016). Cancer patients’ attitudes and experiences of online access to their electronic medical records: A qualitative study. Health Informatics Journal, 165(367), 1–10. This paper was presented in 2015 at the International Symposium on Health Information Management Research, where it received the Best Paper Award.
2. Hägglund, M., Moll, J., Åhlfeldt, R.-M., & Scandurra, I. (2018). Timing It Right – Patients’ Online Access to Their Record Notes in Sweden. Stud Health Technol Inform, 247, 336–340.