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hi I'm Jordan Everson a public health

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Analyst at ONC and today I'll be

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speaking with the authors of a recent

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study on patient attitudes about

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immediate access to test results

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appearing in GMO open the study is

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deeply relevant to onc's recent policy

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and I'm excited to talk about the

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implications of the authors

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today I'm joined by Brian Stites

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instructor in the department of

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biomedical informatics at Vanderbilt

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University Medical Center Robert turr

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assistant professor in the department of

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emergency medicine at the University of

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Texas Southwestern Medical Center and

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Catherine duroche associate professor of

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medicine at Harvard Medical School and

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the executive director of OpenNotes I'd

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like to thank you all for joining me

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today and start with a question for

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Brian

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Brian could you provide an overview of

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your study and the key findings what did

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patients say about test results that

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were immediately released to them

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yeah absolutely so our study provides I

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think the largest multi-site survey to

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date about patient portal users

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perceptions and attitudes kind of

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related to viewing their immediately

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released test results through the

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patient portal since the implementation

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of the 21st century cures Act

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um so we surveyed patients who received

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their results between April 2021 and

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April 2022 across four academic medical

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centers and we were saved just over 8

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000 responses so

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um a couple of really key findings

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um so first and I think kind of overall

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patients and Care part Partners were

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really overwhelmingly

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um supportive and preferred to have

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their immediate access to results so

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this was even if it meant reviewing the

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results before their provider

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um this held true even among those

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individuals receiving abnormal results

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and just even though there was this

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preference towards receiving these

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immediately released results

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um they're receiving the abnormal

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results was associated with nearly twice

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the likelihood of worry compared to

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respondents who

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um receive normal results

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we also found an association between

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pre-counseling so this is whether a

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clinician discussed the reason for the

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tests and the implications for the test

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prior to ordering or the time of

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ordering

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um and films association between

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pre-counseling and reduced patient worry

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but this Association was only

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significant at two sites

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um and when we combine the models across

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all Sites not significant in that

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combined model

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great so thank you for that kind of high

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level overview I wanted to follow up

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with the question kind of drilling down

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into

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um the question of worry and and

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potential psychological or emotional

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effects from getting immediate access

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for test results and this is really a

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question for you uh Rob

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um so you report that overall about

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eight percent of patients were more

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worried after seeing test results than

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before and something I thought was

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interesting is that more patients said

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they were less worried after seeing test

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results normal or abnormal than before

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seeing those results so if I read your

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first figure right in the Paper 51 of

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patients are less worried after seeing a

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normal test result and 36 percent of

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patients are less worried after seeing

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an abnormal test result compared to

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smaller percent that are more worried

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after seeing results so you know overall

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how should we think about the potential

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psychological harms or maybe benefits to

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patients from the immediate release of

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results

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yeah so our study provides a a pretty

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large sample size that suggests you know

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in aggregate that information is

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empowering the patients and it can

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relieve worry I think is sort of the big

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picture uh story of of what you're

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describing here even in the center of

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abnormal test results

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um however it's probably a little bit

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too early to get too deep into

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psychological harms or benefits uh two

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patients from the immediate release of

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these results especially in the setting

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that

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um you know we haven't studied this

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specifically we have this evidence in

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aggregate but this really is going to

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require more in-depth studies

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qualitative work most likely as well as

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more generalizable work including other

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cohorts to be able to say that more

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definitively

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yeah do you have a sense of what that

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kind of work would look like just very

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broadly

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I mean I think you start by finding a

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cohort like the one that we had and we

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go in and start open-ended with you know

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unstructured interviews and and see

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where they go and and follow a

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progressively more structured approach

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um

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you know the other thing is inherently

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our study was focused on existing portal

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users which introduces a significant

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bias that we all want to make sure that

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we're accounting for as we design future

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studies to make sure that we're getting

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out and asking folks who maybe don't

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regularly use the tools why they don't

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how they might benefit them but also

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what might what they might be afraid of

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related to the use of the tools

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on that thread one thing I noted in this

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study is that you report that 17 of

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patients that receive test results

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through the portal were more worried

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after viewing abnormal results than

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before seeing the result and I was

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wondering if you have a sense of how

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that compares to rates of worry among

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patients who are told by a clinician

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told by their physician I could imagine

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you know bad news is kind of bad news

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and would make me worried regardless of

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whether I heard it from a clinician or

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saw it on my portal and I'm wondering if

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you could describe you know what is the

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difference in hearing it from clinician

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versus seeing it on a portal and maybe

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tied to that are there things we could

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do to bridge whatever difference uh that

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you perceive there

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you know my personal Instinct was I was

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expecting that number to be higher than

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it was

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um

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but I again sort of like our prior

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question I'm not sure that we can answer

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this with sufficient rigor yet to answer

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that question definitively and it

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definitely wasn't addressed by the work

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we did in this study it's a perfect

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night is for future studies though

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maybe following up on bridging that Gap

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in that idea and this question for Brian

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is one of the key implications of your

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study you mentioned is the role of

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pre-counseling to prepare patients for

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test results could you just expand on

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that more do you do you have a sense of

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how often patients understand the

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implications of results today uh how

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might that be improved uh I'll tell you

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from experience I recently received an

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abnormal result and it ended up being

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pretty meaningless but it really took me

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independently digging online to figure

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that out and I wonder if that could go

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better I did that you know before the

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physician got back to me maybe I could

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be helped by the portal in doing that I

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don't know just some thoughts and

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wondering about your your views

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yeah I mean so again I think the study

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didn't specifically measure the patient

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understanding

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um around the result but but did take I

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think kind of

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kind of a sense of

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of what are patients needing as far as

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information seeking and kind of next

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steps after reviewing that result to get

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the most benefit so we did see that

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nearly 57 percent of respondents in our

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survey went looking for additional

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information after they reviewed those

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results

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um and the majority of these individuals

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looked at the internet

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um about a quarter asked another health

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care provider

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um and then and some of our previously

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published research um so this is another

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paper from about a year ago or so

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um we were looking at result review

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Trends following our transition to

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curious compliance here at Vanderbilt

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and found that messaging nearly doubled

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and the six hours following reviewing

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messages

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compared to that pre-curs time and so

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you know again while we can't really say

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and speak to the understanding

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um I think both of these findings

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suggest that there are these unned unmet

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information needs

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especially around the reviewing and

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understanding the implications of the

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results and

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um is a really great point and really

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great opportunity for future study

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yeah I I wonder what this idea of kind

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of unmet information needs in mind is

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there something you all are think to

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explore or would recommend health

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systems or health I.T developers would

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do to kind of facilitate transition to

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immediate release and maximize the

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benefit minimize you know the potential

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negative impacts of that transition to

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to immediate release I don't know maybe

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Vanderbilt has some specific things or

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your other institutions

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uh so uh not as familiar with with other

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institutions I know you know many of the

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patient portals offer functionality with

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um select like information resources

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that are available through the portal

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um or different ways of of helping to

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address those information needs either

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through pre-counseling or

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um or different resources or or even

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some in some instances things like

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um automated chat features things like

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that but I think there's also

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opportunity allowing patients to have

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greater flexibility in kind of managing

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the release and notification preferences

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um and I think while some patients May

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may like to receive these results as

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soon as possible and have time to review

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um and and do their own research there's

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also likely a cohort of patients who

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would rather wait and get some of this

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information from a provider where

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they're able to ask questions or or get

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the provider's thoughts and then go do

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their research and so I think we've got

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some ongoing work to investigate some of

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these notification preferences and some

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of these opportunities

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um but but that's still ongoing and

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something we're really looking forward

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to

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foreign

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kind of strategies Health Systems and

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developers might might pursue around

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this

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well there are there does seem to be a

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trend toward

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um

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or pushing it out information to

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patients through the portal at the time

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that the test is ordered saying you may

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see these results before like my home

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institution sends a notification that

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you may see the results before I do but

288
00:10:12,540 --> 00:10:17,519
I will call you

289
00:10:14,640 --> 00:10:20,100
um they sort of try to let set the

290
00:10:17,519 --> 00:10:21,600
expectations for patients that yep you

291
00:10:20,100 --> 00:10:22,920
might see this but I'm still going to

292
00:10:21,600 --> 00:10:25,380
get in touch with you so if you have

293
00:10:22,920 --> 00:10:27,000
questions you know don't worry about it

294
00:10:25,380 --> 00:10:29,399
we're going to we are going to get a

295
00:10:27,000 --> 00:10:33,060
chance to talk so kind of setting that

296
00:10:29,399 --> 00:10:35,040
up in advance to manage expectations it

297
00:10:33,060 --> 00:10:36,300
does seem to be something I've seen I'm

298
00:10:35,040 --> 00:10:38,160
hearing

299
00:10:36,300 --> 00:10:40,200
um from lots of different places that

300
00:10:38,160 --> 00:10:44,820
that seems to be how they're handling it

301
00:10:40,200 --> 00:10:46,320
rather than I think what what uh what's

302
00:10:44,820 --> 00:10:48,899
kind of implicit in what you're saying

303
00:10:46,320 --> 00:10:52,680
is are there resources that could be

304
00:10:48,899 --> 00:10:56,279
provided post path like

305
00:10:52,680 --> 00:10:58,320
a medical dictionary or here's the range

306
00:10:56,279 --> 00:10:59,940
with a little explanation saying if

307
00:10:58,320 --> 00:11:01,740
you're just outside the range

308
00:10:59,940 --> 00:11:05,519
that really doesn't mean anything for

309
00:11:01,740 --> 00:11:08,519
this test and I haven't seen as much of

310
00:11:05,519 --> 00:11:12,200
that kind of work as I have the sort of

311
00:11:08,519 --> 00:11:12,200
a free expectation management

312
00:11:13,380 --> 00:11:17,040
so it seems like maybe there are three

313
00:11:15,000 --> 00:11:19,380
options there's more information there's

314
00:11:17,040 --> 00:11:21,000
expectation setting and then maybe and

315
00:11:19,380 --> 00:11:23,820
then the third Brian was describing was

316
00:11:21,000 --> 00:11:27,060
really giving patients the ability to

317
00:11:23,820 --> 00:11:29,220
exert their preferences

318
00:11:27,060 --> 00:11:31,920
and making sure that patients know that

319
00:11:29,220 --> 00:11:34,620
they can I'm not sure I'm not convinced

320
00:11:31,920 --> 00:11:37,140
that most patients unless you're kind of

321
00:11:34,620 --> 00:11:38,940
a portal super user you probably don't

322
00:11:37,140 --> 00:11:41,899
know that you can change your

323
00:11:38,940 --> 00:11:41,899
notification settings

324
00:11:42,839 --> 00:11:46,079
although it makes a lot of sense I can

325
00:11:44,220 --> 00:11:48,120
change my notifications for everything

326
00:11:46,079 --> 00:11:50,459
else why not for them right the patient

327
00:11:48,120 --> 00:11:51,079
portal right

328
00:11:50,459 --> 00:11:52,920
um

329
00:11:51,079 --> 00:11:54,480
that's really helpful to Think Through

330
00:11:52,920 --> 00:11:56,339
kind of the range of options but I

331
00:11:54,480 --> 00:11:57,480
wanted to take a I guess a step back and

332
00:11:56,339 --> 00:11:59,760
think a little bit more about the

333
00:11:57,480 --> 00:12:01,560
broader context of your study

334
00:11:59,760 --> 00:12:03,480
um and Catherine this is a question for

335
00:12:01,560 --> 00:12:05,220
you I'm aware of a few other studies on

336
00:12:03,480 --> 00:12:07,920
this topic and patient views on

337
00:12:05,220 --> 00:12:09,600
receiving test results portal but I want

338
00:12:07,920 --> 00:12:11,399
to ask you know how your results compare

339
00:12:09,600 --> 00:12:12,899
to those other studies and if you have a

340
00:12:11,399 --> 00:12:13,860
sense for why there there might be

341
00:12:12,899 --> 00:12:15,360
differences

342
00:12:13,860 --> 00:12:17,700
sure

343
00:12:15,360 --> 00:12:19,620
um so there are a few studies around

344
00:12:17,700 --> 00:12:21,540
this topic and some that were a couple

345
00:12:19,620 --> 00:12:24,420
that were done kind of right before the

346
00:12:21,540 --> 00:12:26,640
implementation of the rule and what this

347
00:12:24,420 --> 00:12:28,800
what those studies showed first I just

348
00:12:26,640 --> 00:12:30,779
want to mention these are small

349
00:12:28,800 --> 00:12:33,300
studies so

350
00:12:30,779 --> 00:12:34,620
take them you know take the results for

351
00:12:33,300 --> 00:12:36,540
what they're worth they're small studies

352
00:12:34,620 --> 00:12:38,880
but one

353
00:12:36,540 --> 00:12:41,640
um one showed that Physicians not

354
00:12:38,880 --> 00:12:44,639
surprisingly Physicians and patients are

355
00:12:41,640 --> 00:12:46,800
pretty far apart on their views of

356
00:12:44,639 --> 00:12:48,899
getting test results through the portal

357
00:12:46,800 --> 00:12:52,139
with patients being overwhelmingly

358
00:12:48,899 --> 00:12:54,180
positive about it and clinicians feeling

359
00:12:52,139 --> 00:12:55,920
like this is not a great idea my

360
00:12:54,180 --> 00:12:58,019
patients are going to be very worried

361
00:12:55,920 --> 00:13:00,060
and upset by what they're by what

362
00:12:58,019 --> 00:13:03,000
they're seeing so there's this there's a

363
00:13:00,060 --> 00:13:05,579
big gap which is not a surprise

364
00:13:03,000 --> 00:13:07,500
um the other more recent the other kind

365
00:13:05,579 --> 00:13:09,839
of right before the cures rule was

366
00:13:07,500 --> 00:13:13,260
implemented studies showed that patients

367
00:13:09,839 --> 00:13:15,180
had differing preferences for what they

368
00:13:13,260 --> 00:13:16,980
wanted to receive through the portal and

369
00:13:15,180 --> 00:13:20,880
it really looks like those preferences

370
00:13:16,980 --> 00:13:23,639
are are affected by how serious they

371
00:13:20,880 --> 00:13:27,899
perceive the tests to be so for things

372
00:13:23,639 --> 00:13:29,700
like cholesterol checks or a strep test

373
00:13:27,899 --> 00:13:31,560
they're very willing to get those

374
00:13:29,700 --> 00:13:35,040
results through the portal but as you

375
00:13:31,560 --> 00:13:37,980
get to things like genetic testing

376
00:13:35,040 --> 00:13:39,000
um pet scans for Alzheimer's that was

377
00:13:37,980 --> 00:13:41,579
another thing that they talked about

378
00:13:39,000 --> 00:13:44,040
those results they they're much less

379
00:13:41,579 --> 00:13:45,660
likely to want to get those results

380
00:13:44,040 --> 00:13:49,380
through the portal

381
00:13:45,660 --> 00:13:52,440
although when on follow-up questions

382
00:13:49,380 --> 00:13:55,380
asked what if it meant you had to wait

383
00:13:52,440 --> 00:13:57,720
five days ten days two weeks for the

384
00:13:55,380 --> 00:14:00,120
results the proportion of people saying

385
00:13:57,720 --> 00:14:02,579
no I want to wait for my for my doctor

386
00:14:00,120 --> 00:14:05,160
to tell me goes down quite a bit so

387
00:14:02,579 --> 00:14:07,560
people are kind of trading off I really

388
00:14:05,160 --> 00:14:10,019
want this information and the longer I

389
00:14:07,560 --> 00:14:12,420
wait the less the less picky I am about

390
00:14:10,019 --> 00:14:16,500
how I get it

391
00:14:12,420 --> 00:14:19,980
um our results are different and I think

392
00:14:16,500 --> 00:14:22,260
it's primarily related to you know the

393
00:14:19,980 --> 00:14:25,440
many those prior studies were really

394
00:14:22,260 --> 00:14:28,079
based on hypothetical questions you know

395
00:14:25,440 --> 00:14:31,500
what if you knew this or what if you had

396
00:14:28,079 --> 00:14:34,079
a test for this and so people were

397
00:14:31,500 --> 00:14:36,480
imagining oh what if I was really

398
00:14:34,079 --> 00:14:38,519
worried that I my mother has Alzheimer's

399
00:14:36,480 --> 00:14:41,660
and we were waiting you know for a test

400
00:14:38,519 --> 00:14:44,279
result what would I want and

401
00:14:41,660 --> 00:14:45,959
we are different we think differently

402
00:14:44,279 --> 00:14:47,760
about things when we think about them in

403
00:14:45,959 --> 00:14:50,699
a hypothetical way versus a real world

404
00:14:47,760 --> 00:14:54,000
experiences experiences which is what we

405
00:14:50,699 --> 00:14:56,279
were testing or and when Real World

406
00:14:54,000 --> 00:14:58,800
experiences happen often people are like

407
00:14:56,279 --> 00:15:01,260
oh actually that was that was okay that

408
00:14:58,800 --> 00:15:02,880
I was worried but it was okay that I was

409
00:15:01,260 --> 00:15:05,399
worried and I still got to talk to the

410
00:15:02,880 --> 00:15:08,100
doctor and it worked out fine

411
00:15:05,399 --> 00:15:10,500
so it kind of this I think both patients

412
00:15:08,100 --> 00:15:13,920
and clinicians can go to that kind of

413
00:15:10,500 --> 00:15:16,260
worst case scenario right away and that

414
00:15:13,920 --> 00:15:18,480
and that um

415
00:15:16,260 --> 00:15:20,160
that makes it more likely for them to

416
00:15:18,480 --> 00:15:22,199
have kind of

417
00:15:20,160 --> 00:15:24,360
um different views about things like oh

418
00:15:22,199 --> 00:15:25,620
no my word the worst case scenario I

419
00:15:24,360 --> 00:15:27,240
would never want to get that through the

420
00:15:25,620 --> 00:15:29,220
portal but most of us aren't dealing

421
00:15:27,240 --> 00:15:32,040
with the worst case scenario every day

422
00:15:29,220 --> 00:15:34,500
and it turns out that patients really

423
00:15:32,040 --> 00:15:36,839
felt like okay this was actually okay so

424
00:15:34,500 --> 00:15:39,300
I think that's the main difference

425
00:15:36,839 --> 00:15:40,620
yeah thanks I appreciate that last piece

426
00:15:39,300 --> 00:15:43,079
because I was having trouble thinking

427
00:15:40,620 --> 00:15:44,220
about why the hypothetical would be so

428
00:15:43,079 --> 00:15:46,920
different from kind of the lived

429
00:15:44,220 --> 00:15:48,720
experience I think this idea of going to

430
00:15:46,920 --> 00:15:50,579
the worst case scenario in your mind

431
00:15:48,720 --> 00:15:53,040
when you're answering a survey question

432
00:15:50,579 --> 00:15:55,199
makes a whole lot of sense to me yeah so

433
00:15:53,040 --> 00:15:56,600
I appreciate that um well and the Sharon

434
00:15:55,199 --> 00:15:59,699
and the questions in that study

435
00:15:56,600 --> 00:16:02,040
deliberately invoked that worst case

436
00:15:59,699 --> 00:16:05,519
scenario with those worst case scenario

437
00:16:02,040 --> 00:16:07,260
situations right God okay that yeah that

438
00:16:05,519 --> 00:16:09,180
you have more reason that that makes a

439
00:16:07,260 --> 00:16:11,639
lot of sense

440
00:16:09,180 --> 00:16:13,320
um I guess on the other side of kind of

441
00:16:11,639 --> 00:16:15,180
the maybe not the worst case scenario

442
00:16:13,320 --> 00:16:16,800
but but the problem I think this is a

443
00:16:15,180 --> 00:16:18,959
question primarily for Rob but but

444
00:16:16,800 --> 00:16:20,160
anyone could jump in I suppose I wanted

445
00:16:18,959 --> 00:16:22,500
to get a sense of how you see the

446
00:16:20,160 --> 00:16:24,420
problem that is being addressed by the

447
00:16:22,500 --> 00:16:26,279
immediate release of results you know we

448
00:16:24,420 --> 00:16:28,260
at onc did some analysis a few years

449
00:16:26,279 --> 00:16:30,060
back and saw and they're about 10 of

450
00:16:28,260 --> 00:16:32,040
people that just you know all people

451
00:16:30,060 --> 00:16:33,420
report having waited longer than they

452
00:16:32,040 --> 00:16:35,160
thought was reasonable to get a test

453
00:16:33,420 --> 00:16:37,380
result in the prior year and you know

454
00:16:35,160 --> 00:16:39,779
that's a pretty high number given that a

455
00:16:37,380 --> 00:16:40,800
decent fraction of folks didn't have a

456
00:16:39,779 --> 00:16:42,899
test result

457
00:16:40,800 --> 00:16:45,180
um and so I wonder what kind of demand

458
00:16:42,899 --> 00:16:46,560
or related motivation you all have seen

459
00:16:45,180 --> 00:16:48,420
for the immediate release of test

460
00:16:46,560 --> 00:16:49,740
results to what extent you know this is

461
00:16:48,420 --> 00:16:52,079
a

462
00:16:49,740 --> 00:16:54,500
a problem you characterize it or how you

463
00:16:52,079 --> 00:16:54,500
describe it

464
00:16:54,839 --> 00:16:58,620
sure

465
00:16:56,100 --> 00:17:00,480
so at the end of the day Open results is

466
00:16:58,620 --> 00:17:02,699
about a you know empowering patients to

467
00:17:00,480 --> 00:17:04,140
use clinical data which is their data to

468
00:17:02,699 --> 00:17:06,079
make informed decisions about their

469
00:17:04,140 --> 00:17:09,540
lives their health care

470
00:17:06,079 --> 00:17:11,100
the reality is Health Care is complex

471
00:17:09,540 --> 00:17:13,020
and there are plenty of situations where

472
00:17:11,100 --> 00:17:16,020
balls get dropped within you know daily

473
00:17:13,020 --> 00:17:18,419
care practices and I think a lot of

474
00:17:16,020 --> 00:17:20,640
these situations are opportunities where

475
00:17:18,419 --> 00:17:22,439
immediate release of results and access

476
00:17:20,640 --> 00:17:23,959
to portals can allow patients to raise

477
00:17:22,439 --> 00:17:26,339
concerns earlier

478
00:17:23,959 --> 00:17:28,140
and it may provide a safety net for

479
00:17:26,339 --> 00:17:30,419
patients to identify problems that would

480
00:17:28,140 --> 00:17:32,100
be missed by a primary team just given

481
00:17:30,419 --> 00:17:35,160
the overburdened nature of health care

482
00:17:32,100 --> 00:17:37,440
for a lot of teams these days it also

483
00:17:35,160 --> 00:17:40,140
allows for easier sharing so as you know

484
00:17:37,440 --> 00:17:41,760
a personal example when I work

485
00:17:40,140 --> 00:17:44,100
clinically as an Emergency Physician

486
00:17:41,760 --> 00:17:45,600
often folks have gone to two three four

487
00:17:44,100 --> 00:17:48,780
Health Systems within the last six

488
00:17:45,600 --> 00:17:51,660
months and I find that oftentimes if

489
00:17:48,780 --> 00:17:53,160
we're not using a compatible EHR I can't

490
00:17:51,660 --> 00:17:54,960
see their records

491
00:17:53,160 --> 00:17:56,520
but nowadays a lot of patients are

492
00:17:54,960 --> 00:17:59,340
starting to become more Nimble with the

493
00:17:56,520 --> 00:18:01,860
use of patient portals and I can see the

494
00:17:59,340 --> 00:18:03,780
results from another institution because

495
00:18:01,860 --> 00:18:05,539
the patient has access and is empowered

496
00:18:03,780 --> 00:18:09,240
to share that information

497
00:18:05,539 --> 00:18:10,860
so it enhances interoperability

498
00:18:09,240 --> 00:18:13,740
um it lets me personally take better

499
00:18:10,860 --> 00:18:15,299
care of folks in a collaborative way and

500
00:18:13,740 --> 00:18:16,980
avoids waste by not having to repeat

501
00:18:15,299 --> 00:18:18,900
studies that they had already had one

502
00:18:16,980 --> 00:18:20,880
two three weeks ago

503
00:18:18,900 --> 00:18:22,679
um so in addition to an empowerment

504
00:18:20,880 --> 00:18:25,860
thing it's also a patient safety thing

505
00:18:22,679 --> 00:18:27,120
so that to me is you know the the core

506
00:18:25,860 --> 00:18:29,539
of the problem that we're trying to

507
00:18:27,120 --> 00:18:29,539
solve here

508
00:18:30,900 --> 00:18:34,200
I love that I often think of the

509
00:18:32,460 --> 00:18:36,419
empowerment side but the patient safety

510
00:18:34,200 --> 00:18:38,640
side is one that that I hear less

511
00:18:36,419 --> 00:18:41,580
Beekman and think it makes a whole lot

512
00:18:38,640 --> 00:18:43,559
of sense you know one more set of eyes

513
00:18:41,580 --> 00:18:46,140
really valuable

514
00:18:43,559 --> 00:18:48,419
um so so you won't mentioned Open

515
00:18:46,140 --> 00:18:50,400
results and that made me think uh

516
00:18:48,419 --> 00:18:52,440
Catherine a work that you you've LED on

517
00:18:50,400 --> 00:18:54,900
open Notes which has worked to increase

518
00:18:52,440 --> 00:18:56,400
patient transparency in healthcare and

519
00:18:54,900 --> 00:18:58,080
related domains most obviously by

520
00:18:56,400 --> 00:19:00,120
supporting patient access to their

521
00:18:58,080 --> 00:19:03,059
clinical notes hence the name I suppose

522
00:19:00,120 --> 00:19:04,500
uh so I wanted to ask you you know what

523
00:19:03,059 --> 00:19:06,120
concerns were initially raised about

524
00:19:04,500 --> 00:19:08,100
making clinical notes available to

525
00:19:06,120 --> 00:19:10,620
patients and what parallels do you see

526
00:19:08,100 --> 00:19:12,539
with those concerns and and this kind of

527
00:19:10,620 --> 00:19:14,400
Open results uh immediate release of

528
00:19:12,539 --> 00:19:16,740
test results

529
00:19:14,400 --> 00:19:19,559
that's a great question

530
00:19:16,740 --> 00:19:22,440
um many of the concerns that we've heard

531
00:19:19,559 --> 00:19:25,320
about test results so the

532
00:19:22,440 --> 00:19:28,320
um my patients will be upset my patients

533
00:19:25,320 --> 00:19:30,419
will be confused uh this is not for my

534
00:19:28,320 --> 00:19:33,120
patients maybe some other patients but

535
00:19:30,419 --> 00:19:37,799
it's not for my patients we're the exact

536
00:19:33,120 --> 00:19:41,160
same things we heard prior to open Notes

537
00:19:37,799 --> 00:19:43,500
implementation so there's a so there's a

538
00:19:41,160 --> 00:19:47,100
lot of parallels between the two

539
00:19:43,500 --> 00:19:48,840
and this study actually suggests that

540
00:19:47,100 --> 00:19:51,600
there's a lot of uh there's a lot of

541
00:19:48,840 --> 00:19:54,419
parallels post implementation as well so

542
00:19:51,600 --> 00:19:57,059
we found across from hundreds of open

543
00:19:54,419 --> 00:19:59,820
notes implementations that clinicians

544
00:19:57,059 --> 00:20:02,340
tended to have the same set of worries

545
00:19:59,820 --> 00:20:04,559
no matter where they were what kind of

546
00:20:02,340 --> 00:20:06,120
an institution they worked in what what

547
00:20:04,559 --> 00:20:08,220
their specialty was they all sort of

548
00:20:06,120 --> 00:20:11,640
worried about the same bucket of of

549
00:20:08,220 --> 00:20:15,059
things and post implementation it was

550
00:20:11,640 --> 00:20:16,799
generally fine most of the things they

551
00:20:15,059 --> 00:20:19,620
worried about

552
00:20:16,799 --> 00:20:21,299
didn't come to the past the difficult

553
00:20:19,620 --> 00:20:24,179
patients are going to that worst case

554
00:20:21,299 --> 00:20:26,220
scenario you know their patient who was

555
00:20:24,179 --> 00:20:28,140
hard to deal with prior to

556
00:20:26,220 --> 00:20:31,200
implementation still hard to deal with

557
00:20:28,140 --> 00:20:34,200
post implementation but it did but for

558
00:20:31,200 --> 00:20:38,220
but for the majority of their patients

559
00:20:34,200 --> 00:20:40,160
it turned out to be just fine patients

560
00:20:38,220 --> 00:20:43,860
the patients who read the notes loved it

561
00:20:40,160 --> 00:20:47,460
and it didn't tend to cause a lot of

562
00:20:43,860 --> 00:20:49,380
extra work for them now the the main the

563
00:20:47,460 --> 00:20:50,820
one difference we are hearing a signal

564
00:20:49,380 --> 00:20:53,220
though the one difference with the test

565
00:20:50,820 --> 00:20:56,280
results is in that increase in messaging

566
00:20:53,220 --> 00:20:58,740
after the in the you know immediate

567
00:20:56,280 --> 00:21:01,260
hours after the result is released and I

568
00:20:58,740 --> 00:21:03,780
I do think that will that there needs to

569
00:21:01,260 --> 00:21:05,460
be more work in that area and how to

570
00:21:03,780 --> 00:21:08,340
deal with the volume of messaging

571
00:21:05,460 --> 00:21:10,140
because we do we encourage patients to

572
00:21:08,340 --> 00:21:12,679
use the portal you know you hear this is

573
00:21:10,140 --> 00:21:15,059
the best way to reach me

574
00:21:12,679 --> 00:21:18,000
I love to manage my patient panel

575
00:21:15,059 --> 00:21:19,980
through the portal and I think patients

576
00:21:18,000 --> 00:21:21,480
are now taking many more patients are

577
00:21:19,980 --> 00:21:23,580
taking advantage of that and we don't

578
00:21:21,480 --> 00:21:26,220
have the symptoms set up to deal with it

579
00:21:23,580 --> 00:21:28,500
so that is the main difference but on

580
00:21:26,220 --> 00:21:30,659
the whole

581
00:21:28,500 --> 00:21:32,760
um the worries and the effects are the

582
00:21:30,659 --> 00:21:35,400
same which which suggest that this is

583
00:21:32,760 --> 00:21:37,799
really a cultural change that we're

584
00:21:35,400 --> 00:21:40,380
going through here it's just one more

585
00:21:37,799 --> 00:21:42,780
step on the road from

586
00:21:40,380 --> 00:21:45,840
the doctor owns the information about

587
00:21:42,780 --> 00:21:48,059
the patient to the patient is the owner

588
00:21:45,840 --> 00:21:50,820
of the information

589
00:21:48,059 --> 00:21:53,700
it fits right into that broader story

590
00:21:50,820 --> 00:21:55,500
yeah it makes it and with open Notes

591
00:21:53,700 --> 00:21:58,380
there wasn't a similar increase in

592
00:21:55,500 --> 00:22:00,539
messaging or not as dramatic no and in

593
00:21:58,380 --> 00:22:02,220
fact the early studies really tracked

594
00:22:00,539 --> 00:22:04,740
that very closely because there was a

595
00:22:02,220 --> 00:22:07,260
lot of worry about so they tracked phone

596
00:22:04,740 --> 00:22:09,480
call volume and portal message volume

597
00:22:07,260 --> 00:22:11,940
and did not see the kind of increases

598
00:22:09,480 --> 00:22:15,080
that we that that some places are

599
00:22:11,940 --> 00:22:15,080
reporting around test results

600
00:22:15,659 --> 00:22:22,380
and in our qualitative work the

601
00:22:19,200 --> 00:22:24,059
conclusion that we drew is uh from we've

602
00:22:22,380 --> 00:22:28,440
interviewed with patients and clinicians

603
00:22:24,059 --> 00:22:30,000
is for every patient that was writing or

604
00:22:28,440 --> 00:22:32,820
calling about something that they read

605
00:22:30,000 --> 00:22:35,220
in a note there were between one and two

606
00:22:32,820 --> 00:22:37,320
patients who were not calling for the

607
00:22:35,220 --> 00:22:40,080
question because they read their note

608
00:22:37,320 --> 00:22:42,620
and it answered the question for them

609
00:22:40,080 --> 00:22:44,880
foreign

610
00:22:42,620 --> 00:22:46,320
intuitive sense to me that you get a lot

611
00:22:44,880 --> 00:22:48,059
more information going back to kind of

612
00:22:46,320 --> 00:22:49,559
the information and context you're

613
00:22:48,059 --> 00:22:51,840
discussing earlier there's just a whole

614
00:22:49,559 --> 00:22:54,659
lot more there in a note and you get

615
00:22:51,840 --> 00:22:56,580
this kind of right uh context list test

616
00:22:54,659 --> 00:22:58,559
result and you can really have questions

617
00:22:56,580 --> 00:23:01,260
that you want answered quickly and they

618
00:22:58,559 --> 00:23:03,179
can be concerned I can see see how that

619
00:23:01,260 --> 00:23:05,460
plays out

620
00:23:03,179 --> 00:23:08,340
the secure messaging you know is

621
00:23:05,460 --> 00:23:10,440
managing that it seems like it uh an

622
00:23:08,340 --> 00:23:12,840
interesting challenge across a few

623
00:23:10,440 --> 00:23:14,700
Dynamics I wonder too if it isn't

624
00:23:12,840 --> 00:23:16,080
somehow related to the structure of the

625
00:23:14,700 --> 00:23:17,700
portal

626
00:23:16,080 --> 00:23:19,700
um so if you think about

627
00:23:17,700 --> 00:23:22,919
the way some

628
00:23:19,700 --> 00:23:25,140
EHR portals work the no you might get a

629
00:23:22,919 --> 00:23:26,940
notification that you have an after

630
00:23:25,140 --> 00:23:29,760
visit summary and then you have to kind

631
00:23:26,940 --> 00:23:31,919
of dig through the portal to get to the

632
00:23:29,760 --> 00:23:33,840
note now there's the first you find the

633
00:23:31,919 --> 00:23:35,520
visits and then you find the then you

634
00:23:33,840 --> 00:23:36,900
find the right visit then you find the

635
00:23:35,520 --> 00:23:38,840
alternative summary then you click on

636
00:23:36,900 --> 00:23:41,220
the Note whereas the test results are

637
00:23:38,840 --> 00:23:43,200
usually pretty easy we've been sharing

638
00:23:41,220 --> 00:23:44,640
them for a long time much longer than

639
00:23:43,200 --> 00:23:47,100
we've been sharing notes they're pretty

640
00:23:44,640 --> 00:23:49,020
easy to find on the portal so I do

641
00:23:47,100 --> 00:23:51,120
wonder if that isn't some of the

642
00:23:49,020 --> 00:23:53,640
difference that it's just much it's a

643
00:23:51,120 --> 00:23:55,740
lot less work on the patient side to

644
00:23:53,640 --> 00:23:57,419
find the test result yeah and with open

645
00:23:55,740 --> 00:23:59,760
Notes would you get anything equivalent

646
00:23:57,419 --> 00:24:02,580
to a notification about the note being

647
00:23:59,760 --> 00:24:04,260
there like you do some some places would

648
00:24:02,580 --> 00:24:06,360
send notifications and some don't it

649
00:24:04,260 --> 00:24:09,299
really just depends on the on the

650
00:24:06,360 --> 00:24:11,400
institutional policy

651
00:24:09,299 --> 00:24:13,140
really interesting to track the Lessons

652
00:24:11,400 --> 00:24:15,179
Learned in the in the couple of ways

653
00:24:13,140 --> 00:24:18,179
we're seeing that yeah to think about

654
00:24:15,179 --> 00:24:20,940
how this will will overall

655
00:24:18,179 --> 00:24:22,500
um appreciate that that Insight I guess

656
00:24:20,940 --> 00:24:24,960
um you know with that I as a final

657
00:24:22,500 --> 00:24:27,000
thought I wanted to ask uh you all in

658
00:24:24,960 --> 00:24:29,039
your view as we move forward with this

659
00:24:27,000 --> 00:24:31,140
is there a rule that onc should be

660
00:24:29,039 --> 00:24:33,960
playing and helping the industry respond

661
00:24:31,140 --> 00:24:35,760
to the immediate release of test result

662
00:24:33,960 --> 00:24:38,280
rules

663
00:24:35,760 --> 00:24:41,000
um just you know top of mind my thoughts

664
00:24:38,280 --> 00:24:41,000
from you all

665
00:24:42,360 --> 00:24:47,520
well I know that there's been in from

666
00:24:45,419 --> 00:24:49,980
that onc has included information about

667
00:24:47,520 --> 00:24:52,980
open notes and how to implement open

668
00:24:49,980 --> 00:24:55,080
notes in your practice in a way that's

669
00:24:52,980 --> 00:24:57,480
kind of it's going to best practices for

670
00:24:55,080 --> 00:25:02,159
implementing and I wonder if onc

671
00:24:57,480 --> 00:25:04,320
shouldn't be involved in some efforts to

672
00:25:02,159 --> 00:25:07,740
understand what are the best practices

673
00:25:04,320 --> 00:25:09,059
for releasing test results is it what

674
00:25:07,740 --> 00:25:10,679
kind of language helps with

675
00:25:09,059 --> 00:25:12,600
pre-counseling

676
00:25:10,679 --> 00:25:14,940
um what kind of notification settings

677
00:25:12,600 --> 00:25:17,299
should be available do we need more

678
00:25:14,940 --> 00:25:20,880
granular controls at the patient level

679
00:25:17,299 --> 00:25:24,539
for for this kind of access what should

680
00:25:20,880 --> 00:25:26,760
a practicing physician do in order to

681
00:25:24,539 --> 00:25:28,620
implement this in a way that's good for

682
00:25:26,760 --> 00:25:31,799
patients and also good for clinicians

683
00:25:28,620 --> 00:25:34,740
and I I do want I I have kind of

684
00:25:31,799 --> 00:25:37,440
wondered about whether onc if that's a

685
00:25:34,740 --> 00:25:40,440
role that that that would if that's a

686
00:25:37,440 --> 00:25:44,279
role that onc would get into sort of

687
00:25:40,440 --> 00:25:45,720
like part of the EHR Playbook idea

688
00:25:44,279 --> 00:25:47,700
right I was going to mention that the

689
00:25:45,720 --> 00:25:51,120
help that you played yeah is it kind of

690
00:25:47,700 --> 00:25:55,860
model for for that type of work

691
00:25:51,120 --> 00:25:57,779
sense and any other thoughts Ryan or Rob

692
00:25:55,860 --> 00:25:59,520
yeah I mean one one slightly different

693
00:25:57,779 --> 00:26:02,220
Viewpoint that I would point out based

694
00:25:59,520 --> 00:26:04,320
on some satellite work from this project

695
00:26:02,220 --> 00:26:05,820
um would be patients are using these

696
00:26:04,320 --> 00:26:07,880
tools in more settings than I think

697
00:26:05,820 --> 00:26:10,799
we've traditionally considered which is

698
00:26:07,880 --> 00:26:12,720
ambulatory visit test gets ordered in an

699
00:26:10,799 --> 00:26:14,880
asynchronous fashion something happens

700
00:26:12,720 --> 00:26:16,500
test comes back

701
00:26:14,880 --> 00:26:17,880
patient reviews and at some point the

702
00:26:16,500 --> 00:26:20,640
clinician reviews the result with the

703
00:26:17,880 --> 00:26:22,320
patient we know and are getting really

704
00:26:20,640 --> 00:26:23,820
signals that folks are using these in

705
00:26:22,320 --> 00:26:26,220
different environments including in the

706
00:26:23,820 --> 00:26:28,679
including in the acute care setting so

707
00:26:26,220 --> 00:26:32,159
emergency departments icus places like

708
00:26:28,679 --> 00:26:34,200
that and I would encourage onc to put

709
00:26:32,159 --> 00:26:36,120
some efforts towards making sure that

710
00:26:34,200 --> 00:26:37,380
all of the policies that have been

711
00:26:36,120 --> 00:26:40,080
designed around this traditional

712
00:26:37,380 --> 00:26:41,460
ambulatory workflow still apply in all

713
00:26:40,080 --> 00:26:44,159
these different settings which are now

714
00:26:41,460 --> 00:26:47,220
governed by the implementation of the

715
00:26:44,159 --> 00:26:48,779
cures act information blocking section

716
00:26:47,220 --> 00:26:51,960
so that that would be one thing I'd

717
00:26:48,779 --> 00:26:54,059
throw out there and you know as I always

718
00:26:51,960 --> 00:26:56,520
have two Hats about this right I have my

719
00:26:54,059 --> 00:26:58,200
informatician hat and sort of

720
00:26:56,520 --> 00:27:00,299
patient-centered researcher hat and then

721
00:26:58,200 --> 00:27:01,860
I have my clinician hat where I see some

722
00:27:00,299 --> 00:27:03,299
of the the

723
00:27:01,860 --> 00:27:06,000
um the underbelly of some of this for

724
00:27:03,299 --> 00:27:07,559
lack of a a cleaner way to say it and I

725
00:27:06,000 --> 00:27:09,059
would just you know like to throw out

726
00:27:07,559 --> 00:27:11,039
the importance that we maintained a

727
00:27:09,059 --> 00:27:14,039
nuanced approach there are definitely

728
00:27:11,039 --> 00:27:15,419
opportunities for good and I think we've

729
00:27:14,039 --> 00:27:17,100
demonstrated the Lions share of

730
00:27:15,419 --> 00:27:18,840
opportunities are for good and for

731
00:27:17,100 --> 00:27:21,480
patient empowerment and for improving

732
00:27:18,840 --> 00:27:22,799
patient safety but anybody who who's

733
00:27:21,480 --> 00:27:24,779
been working clinically during this

734
00:27:22,799 --> 00:27:27,299
transition has served at least a few

735
00:27:24,779 --> 00:27:28,799
cases where we're pretty significant

736
00:27:27,299 --> 00:27:32,100
damage has been caused to the patient

737
00:27:28,799 --> 00:27:34,260
clinician relationship uh when when you

738
00:27:32,100 --> 00:27:36,120
know bad things have been disclosed

739
00:27:34,260 --> 00:27:37,500
clinically through the portal when

740
00:27:36,120 --> 00:27:40,559
either the team hadn't prepared the

741
00:27:37,500 --> 00:27:41,940
patient the health I.T infrastructure

742
00:27:40,559 --> 00:27:43,500
wasn't set up to appropriately deliver

743
00:27:41,940 --> 00:27:45,840
the information and I just think it's

744
00:27:43,500 --> 00:27:47,760
important that we all continue to

745
00:27:45,840 --> 00:27:50,279
revisit these topics and remain flexible

746
00:27:47,760 --> 00:27:52,799
and realize that nothing is perfectly

747
00:27:50,279 --> 00:27:53,880
good or perfectly harmful but I just

748
00:27:52,799 --> 00:27:55,140
want to make sure that we're all really

749
00:27:53,880 --> 00:27:57,260
thinking about that in that physical

750
00:27:55,140 --> 00:27:59,700
harm you know

751
00:27:57,260 --> 00:28:02,480
can sometimes be more complex than we

752
00:27:59,700 --> 00:28:02,480
give a credit for

753
00:28:03,960 --> 00:28:07,980
and a great reminder and something out

754
00:28:06,240 --> 00:28:10,080
of our minds and you know we touched on

755
00:28:07,980 --> 00:28:12,120
some of the ways to customize or provide

756
00:28:10,080 --> 00:28:13,679
context to these things that I think I

757
00:28:12,120 --> 00:28:16,440
hope are steps in the right right

758
00:28:13,679 --> 00:28:18,179
direction there uh Brian a last word

759
00:28:16,440 --> 00:28:19,740
before we wrap up

760
00:28:18,179 --> 00:28:22,080
yeah I mean I think

761
00:28:19,740 --> 00:28:23,039
you know like like the others have said

762
00:28:22,080 --> 00:28:25,799
I mean

763
00:28:23,039 --> 00:28:27,779
there's there's so much Nuance here and

764
00:28:25,799 --> 00:28:29,520
there's so much variation in how

765
00:28:27,779 --> 00:28:31,500
different institutions and different

766
00:28:29,520 --> 00:28:33,900
organizations are are kind of

767
00:28:31,500 --> 00:28:35,520
implementing these rules and so helping

768
00:28:33,900 --> 00:28:37,559
to just facilitate that conversation

769
00:28:35,520 --> 00:28:39,600
highlight you know what's working well

770
00:28:37,559 --> 00:28:42,360
for one organization that might help

771
00:28:39,600 --> 00:28:43,559
other organizations and

772
00:28:42,360 --> 00:28:45,419
um you know just kind of keeping that

773
00:28:43,559 --> 00:28:47,159
conversation going

774
00:28:45,419 --> 00:28:49,380
um where we're working towards you know

775
00:28:47,159 --> 00:28:51,480
providing providing all this information

776
00:28:49,380 --> 00:28:52,799
to patients in in a way that they can

777
00:28:51,480 --> 00:28:55,200
use it and

778
00:28:52,799 --> 00:28:57,720
and use that to act on their care and

779
00:28:55,200 --> 00:28:59,400
improve their care

780
00:28:57,720 --> 00:29:00,779
well that makes me think of the kind of

781
00:28:59,400 --> 00:29:03,600
the learning Health System approach and

782
00:29:00,779 --> 00:29:05,340
everybody working learning learning as a

783
00:29:03,600 --> 00:29:07,919
much broader system that an individual

784
00:29:05,340 --> 00:29:10,080
uh locations could ever be so appreciate

785
00:29:07,919 --> 00:29:10,980
that and with that you know I'd like to

786
00:29:10,080 --> 00:29:12,419
thank you all first of all for

787
00:29:10,980 --> 00:29:14,460
conducting this really wonderful and I

788
00:29:12,419 --> 00:29:17,039
think important study and secondly for

789
00:29:14,460 --> 00:29:18,600
taking the time today to talk it over uh

790
00:29:17,039 --> 00:29:20,460
we talked about a few things coming in

791
00:29:18,600 --> 00:29:21,659
the future and really hope to see you

792
00:29:20,460 --> 00:29:22,440
know where you're all ahead with the

793
00:29:21,659 --> 00:29:24,179
work

794
00:29:22,440 --> 00:29:29,480
um so thank you very much

795
00:29:24,179 --> 00:29:29,480
thank you yeah thank you thanks Jordan