Timing of patient access on patient portals

[Annette McKinnon]

Another hot topic - from 50 to 100 tweets on this.

I got into it when I saw a group of radiologists tweeting.

One of them said that 'pandering' to the 96% who want their results right away was not advisable. His oath of "do no harm' would prevent him from making them immediately accessible because of the danger of harm to the 4% who might be distressed by their results and so harm themselves.

Seth M Hardy, MD MBA‏ @__sethmhardy__ 16 Dec 2018More

As a professional I have a duty to do NO harm, not pander to the 94%.

That was Seth Hardy, and he found a 25 year old research paper where this happened to 1 person.

I looped Selina Brudnicki of UHN (University Health Network in Toronto) in and she had a lot to say. eg

.@myUHNPortal built in-house & gives real-time access to results, reports & @myopennotes. Comments you've heard on Twitter reflects sentiments of majority of our users. We have 66K users almost 2 years. Over half receive care at Princess Margaret Cancer Centre.

1/5 For 14 years I heard the argument that patients should receive results in person because they might commit suicide if they reveive ‘bad news' electronically. @UHN @myUHNPortal Patient advisors told us differently - they want results in real time to avoid stress of waiting.

2/5 One year @myUHNPortal project evaluation showed the same sentiments as Patient Advisors. 10K patients responded to survey. 94% said @myUHNPortal improved the patient experience. 94% prefer to receive results in real time, even if they have to wait to speak to their doctor.

3/5 In the publication referenced, it does not mention that the patients explicitly consented to receiving the bad news via mail. The health care team appears to have taken it upon themselves to mail the results, and knew the patient might be at risk for self-harm.

4/5 Wiith @myUHNPortal, patients decide if and how they receive results, and are told they may receive news before their doctor. Some choose to wait until after their visit and review portal results. Doctors should also have the conversation to see what their patients prefer.

5/5 Patients sent for tests for a reason and it shouldn't be a surprise. Tell them why they are being tested, what they might expect, when they will hear back, and what to do if they see negative results. Care team can block results by law if potential self harm suspected.

Liz Salmi - (Great reply!)

Who decided all patients want to receive "bad news" in a doctors office rather than at home surrounded by a comforting environment? Then we might have time to collect our thoughts with loved ones, develop a list of questions, and then go to the visit.

Selina Brudnicki‏ @__sbrudnicki__ Jan 2More

Similar response given by our Patient Advisors. They don't hear past bad news initially and prefer to be at home emotionally with the info. They can prepare themselves armed with questions, plus bring family or caregivers to support them during their visit.

Robin McGee‏ @__TCOrobin__FollowingFollowing @__TCOrobin__More Replying to @__sethmhardy__ @__anetto__ and 7 others

As a patient harmed by poor radiology, and as a psychologist, I support releasing radiology results to patients by portal immediately. It is patronizing to see us all as so fragile we cannot handle bad news. Informed consent is everything.

[Carolyn Canfield]

This is a wonderful example of the need for evidence to support a medical practice that impacts a very large number of patients and their caregivers. That is, many patients are harmed without this practice, and the health outcomes and care experiences of many patients might potentially benefit with the practice.

The potential for harm is in prolonging stress, time and inconvenience cost in waiting for an appointment to hear a test result, denial of a personally supportive environment to learn test result, [and probably more]. On the potential side, the potential for benefit is a prompt and efficient experience, opportunity to improve health literacy to support care decisions, greater accountability and transparency, strengthening trust with the healthcare team and system, generous time to consider how to react, respect for lessening anxiety, [and more].

If patients and carers set priorities for research, wouldn't open and secure reporting of medical tests be a useful study? I think the point about discussing the possible outcomes of the test in advance should be embedded in "informed consent", so open reporting should not take any more office time by the clinician ordering the test.

Now, how do we get this qualitative study going? Who's our natural partner for co-leading this project?

Good health and happy new year to all PAN members!
Cheers, Carolyn