Now let's shift over to Q&A. We've been joined by our resident technology expert as well, Dr. John Torres, who's been sitting in and listening to today's presentation, and will also be helping us answer some of the questions that we're going to be talking about. We've gotten a number of them. Hi, everyone. Hi, John. So the first one comes from one of our viewers and says, our health system has very recently started OpenNotes in our EHR, but gives the individual clinician the authority to toggle off patient access in a particular note that they wish. But we have no consensus on when this is necessary or advisable to block the patient access. What do you guys think? So I would start by saying that most systems do have this potential to block off part of the clinical note. But through HIPAA, while there's some ambiguities, patients do have the right to view their full clinical records. So I think that the notes, I guess my advice would be that notes should be written with the understanding that certainly at some point, the patient might have access to the notes. Yeah, and again, I would come back to the ethical consideration that really strong arguments have to be given for adopting a kind of a paternalistic stance on not disclosing all of an individual's health information to them. I would concur. Certainly people have a right to request their notes. So even if you're not partaking in OpenNotes, if a person does want access to it, they are going to legally be able to get the note and read the notes in some ways. I think blocking access after may create some tension in the therapeutic relationship. And actually, if an outcome will happen, the person will have access to the same note. So it may be better to have these discussions up front about what OpenNotes means and if a person is partaking in it or not. But again, it's not going to mean that patients can't get access to your note. So I think, John, building on that point, another one of our viewers writes in, what type of consent, if any, do you use when offering OpenNotes? So to your point around this idea of having the conversation ahead of time, what do you both recommend in terms of consent in the conversation you have with patients before implementing OpenNotes? So if OpenNotes is done through a portal or your hospital has an electronic system for how the data works, certainly people usually consent that they're going to be accessing and their medical records will be accessible through a portal because clearly if they lost a password or leave it open, other people could see their information or records. So usually it makes sense to have something that says you are accessing your notes, you're taking control of them, you have responsibility when you take your note. If you lose your note or share your note, that's not the hospital system violating your privacy in some sense, it's your note, you've been given it. And I think sometimes just going over what OpenNotes means, and again, going over a discussion with people and saying, look, here's what we're showing you, this is our note, just level setting and helping people understand always goes a long way. So again, if you don't have a portal, it would basically be a general discussion and a consent form where I'm saying we're giving you electronic health information that you can have. And if anyone has questions about consent, you can also send us a consult to ask my advisor, we can kind of guide you through different consent forms that you may want to be using for different electronic communication. It would be a standard consent form for electronic communication that you would use for other things like a portal. Okay, so nothing special. Exactly. So one of our viewers writes in and says, how can we ensure privacy? I guess this idea is particularly around people feeling more sensitive around mental health records. How can we ensure the privacy of mental health records and the recipient on the other end of these OpenNotes? So privacy is also such a big issue and a concern with patients. I think that patients need to be reassured that it's password protected, the information is encrypted. I don't see that these debates though about or these concerns about privacy are going to go away, especially when tech giants are entering this space here. But I think that the usual advice remains for this and that if you want to share your clinical record with other people, that's up to you. But also, you're also entitled through HIPAA to see who has accessed your clinical record as well. So if anything, in certain respects, you have more information through an electronic health record about who has accessed your health information than you would have done through a paper-based system. I think that's exactly right. I think certainly all of us know, even in 2020, no electronic system is perfectly secure. From banking, I think certainly we've all seen headlines and we have actually entire webinars on security and digital age. I think there always is some risk. But again, if these notes are being put into electronic medical records and really what OpenNotes is doing is paying an extra door for a patient to access them, the note is still online. There are still risks of digital data. But I think offering patients a door to read it really isn't creating or generating new risks, but all the usual protections about privacy and those concerns are present here and are not greater, they're not less. We have somebody who wrote in with a question really related to insight within our patients. And so the viewer writes, in regards to SMI, particular schizophrenia, if the patient has no awareness of the illness and has access to notes, could this severely impair recovery and further push the patient away from clinical care? Is that something that we've seen in the data or that you can comment on? I think it's fair to say that that's a question we don't know the answer to. But there are ways in which the notes could be constructed to convey the sensitive information about, for example, a patient may disagree with the diagnosis. And that's that's something that could be written in a sensitive way in the notes. So we, for example, we disagree with what the problem is here. And on the OpenNotes website, in fact, we give some examples of this, how it might be possible to write those sensitive, really nuanced notes that may be more acceptable to certain patients. But I don't, I think we don't know one way or the other whether it is going to be harmful to patients. I'll let John weigh in on this as well as a clinician. No, it's a really good question. Certainly, if people have less insight and they read their notes, what could happen? And what's interesting is the VA has been implementing OpenNotes for many years. And in the research literature, everything has been publicly posted in different health care systems that have implemented OpenNotes. There's no case or example of this causing serious adverse events for patients with schizophrenia, with bipolar, with MDD, with SMI patients that we serve. Again, I don't think anyone has particularly done a study where they grabbed only, say, people with schizophrenia and people with bipolar and said, let's look at OpenNotes. I think we look at the VA as a system that has been offering it to all patients, including those ones. We haven't seen any reports come out where people say we can't do this. This is harmful. So it may be one of those cases where the data doesn't exist directly, but we have some indirect evidence that suggests that this can work. It is certainly not going to cause as much harm. I can say when our team ran a pilot of OpenNotes in our hospital about Israel deaconess and psychiatry, there weren't patients with schizophrenia in it. But the general consensus was that people enjoyed getting a note, they liked it, but it's not nothing remarkable happened on either side. That's a good thing. People said, oh, I have more information. I'm learning things. The clinicians didn't say, oh, my gosh, this is a this is radically transforming the patients and go, oh, my gosh, people used it. It was a new data source. They were happy about it. No one complained, but kind of there weren't these kind of adverse events that happened from that experience. I could also add to that in the Swedish context as well, there's been no emerging data where patients have had access and patients with a whole range of mental health diagnoses have had access to their clinical notes and where, in a sense, unlike in the US, perhaps clinicians were told you have to share your clinical notes. So there was more resistance among the clinical community. So we might have expected to see some pushback or certainly some cases. And that hasn't arisen in Sweden. So perhaps also to vindicate or to certain extent corroborate what what John is saying here. We have another viewer who wrote in, says, can a patient post their open notes on the Internet and publicly share what I write about them? I guess this might be one of the clinician fears or barriers that might prevent a clinician from from using open notes. Has that happened? And what's been the outcome? I'll let John. So I don't think we've seen people ever get their notes again, hear open notes. You can go to the medical records department, request your notes. And I think no matter which way you get your notes, once you have it, it's yours. If you could theoretically make a poster of your note and pay money and make a billboard. And that's an extreme example. But once once the person has to note that they're allowed to to to use it as they see fit, we haven't ever seen patients publicly posting them again. That's something one's worried about. It could happen. A patient could go to the medical records office, say that they have a legal right to see their notes, get their notes and use them. So it's it's a it hasn't happened. But open notes, again, probably wouldn't be a factor of it happening or not happening. Right, I mean, I would just add that that would be the private business in a certain sense of the patient to do what they want with their clinical notes. But we do know that that many patients share their their clinical notes with family, friend, caregivers and so on. And of course, that's their decision to do so. And that, in a sense, may enhance, improve, recall about their care visits, test results and so on. There could be good share. Yeah. Right. Yeah, I can say personally, as a child psychiatrist, I assume that every note I write is going to be read by the school and by the pediatrician and the parents and the family members. So that's kind of a frame set from which I begin working. But I'm wondering, it kind of speaks to another question we have here, which is how do I get started using open notes? I just scrolled away here. How do I get started using open notes if no one is doing it at my clinic? So if people want to dip their toe in the water here and start using open notes, is there an easy entry point? So, I mean, this may sound like a cop out, but what I want to advise you to do is go on to OpenNotes.org because you'll see resources, including templates of letters to write to clinicians and to get the ball rolling. We sort of take this question really seriously. How do you prompt your clinical community to get interested and involved in this? So you'll see some of those resources that may be helpful online. I don't know if John has anything else to add to that. No, that really is the perfect answer because this is the case for a website. There's been a lot of thought put into this. And I think it really is kind of everything from a how-to guide, from nothing to a hundred. All of the pieces are there and all the ways to connect are there. And again, if anyone is very interested in this, we can also, you can submit a consult through SMI Advisor. We can also give you some personal guidance through SMI Advisor. But there's a lot of good resources to get started on the OpenNotes website. Yeah, I mean, the OpenNotes website even has templates of posters to put in your waiting room area. I mean, they've really thought about this a lot. So there's a lot of support there. Well, thank you both so much today for answering all our questions. I think that's all we have time for.

OpenNotes

electronic health records

HIPAA

patient access

informed consent