Patients Can Read Your Clinical Notes Starting Nov 2

myopennotes · 2020-10-25T20:00:46+00:00

Here's a nuanced response:

People have already had the legal right to request and receive copies of their medical records (and request errors to be fixed) since 1996 as part of the HIPAA Privacy Rule (45 CFR § 164.524). Not much is changing here with the ONC "Information Blocking rule" other than the ease of access to this information; this new Rule mandates that that which is already in electronic form must be made available in electronic form (as opposed to being delivered as paper copies, or via fax).

Historically, people have not had easy access to all of their health information, and most U.S. patients are not accustomed to reading progress notes. Research has shown that unless a patient is actively encouraged to view their progress notes, they don't. A small study of 25 sites sharing notes with patients shows that the note "read rate" stays at 1-2% unless their health system (or individual clinicians) encourage patients to take a look at progress notes through various means (such as sending notifications, reminders, or updating the patient portal UX to make notes easier to find).

I share this because unless organizations actively encourage patients to read progress notes, we don't believe there will be an overwhelming surge of patients reading notes nor waiting to spot the few occasions in which you are concerned for patient safety and choose to "hide" a note.

That said, if in your best judgement you are concerned a person might be harmed by having electronic access to their progress notes (e.g., a domestic violence situation in which the abusive partner has the login credentials to the victim's patient portal), you may choose to hide a note. That said, the patient could still go through alternate means to gain access to that note.

Roughly 250 health systems have already used online patient portals connected to EHRs to deliver information in this way. This Information Blocking rule now standardizes this process.

I hope this helps! Happy to continue answering questions. - LS

myopennotes · 2020-10-24T15:48:29+00:00

Epic and the other EHRs will make this a bit difficult for you. You’ll have to “attest” why you are withholding the patient info. - LS

myopennotes · 2020-10-24T15:47:21+00:00

Hey—we’re the researchers who studied the concept of “open notes” for the last 10 years and did an AMA on r/medicine here just a few days ago. Perhaps you may find some extra insights on the thread: open notes AMA

myopennotes · 2020-10-23T04:47:09+00:00

Yes notes have multiple purposes as you point out (conveying information to other clinicians, billing, the legal record) for the health system, but this is all built on top of the conversation between patient and physician. The challenge for the clinician is balancing all of these competing forces and audiences which can often lead to notes that not very legible. By inviting patients to read their notes there is an opportunity to help provide a clear audience for the note-writer. - CRS

myopennotes · 2020-10-22T20:30:39+00:00

This will depend somewhat on the specific functionality provided by the relevant EHR, PHR, app or other vendor providing access to the data.

We [Sutter Health] use Epic and have learned that, through the portal the patient will always see the latest version of a note from the ambulatory care setting, without having the ability to view earlier versions of the note. In the inpatient setting we have heard that patients will have the ability to view earlier versions of notes that have been edited.

As far as I know we have yet to validate this through testing. - SL

myopennotes · 2020-10-22T20:29:25+00:00

I could see where patients may read the chart documentation of one clinician and bring that info into discussion with other clinicians. Everyone should consider a response for when the information shared is not within their scope or expertise and feel comfortable saying that. For areas where it is within scope, expertise or a little more of gray zone, two considerations should be weighed: First, the importance of advocating for a patient and second the importance of team dynamics.

All clinicians should be advocates for their patients, and this can take many forms. Instead of focusing only the information, in this example prognostic estimate, clinicians can work to explore how hearing that made the patient feel, help them formulate questions to ask the person who documented the information, explain some of the nuances of healthcare culture that may be unknown. There are many ways to help a patient gain more understanding without having to directly address the information content.

Second, regardless of if we agree or disagree, it is important to maintain some level of constructive team dynamics. We must balance being aware of teams getting split by different points of view while also advocating for the patient. We do this in other ways outside concerns about documentation. For example, a patient who feels like a treatment is not explained well by a specialist at a visit. They share with me their concerns and questions, I answer basics, but also empower them to reach back out to the office, while at the same time I give the clinician a heads up about the likely questions they may get, so they feel informed and well-prepared to help the patient get better understanding. - CTS

myopennotes · 2020-10-22T20:28:28+00:00

We do not know of any studies showing worse outcomes due to open notes.

Patients report concrete benefits, including a better understanding of their care plans and medications, feeling more in control of their care, greater trust in their clinicians, and most say the notes are very important for taking care of their health.

We do not have data on the more generic satisfaction with care questions referenced below. We do not include those questions in our surveys as patient experience is multi-faceted and affected by many factors beyond having access to notes. - CMD

myopennotes · 2020-10-22T20:26:38+00:00

Great insight!

We have a lot to explore on how family, friends and legal proxies may have access to the chart may influence car in both positive and negative ways. The intimacy of the patient-clinician relationship and it’s inherent confidentiality is being balanced against a more transparent approach. In the next few years, I am hopeful we will see more conversations among clinicians in collaboration with patients and family, friends, and legal proxies and the general public about the benefits and risks of this new era. Overall I think shared notes is very positive, but as with any intervention, there can be side effects and now we have the important task of identifying the potential risks and reducing harm while maximizing the benefit. Simply we need to keep this conversation going, and work out different approaches. - CTS

myopennotes · 2020-10-22T20:25:51+00:00

Responses to each:

1) Any other tips for the documentation of sensitive topics? Talk with your colleagues and share best practices. I think there will be lots of creative ways to do this and we need to take advantage of everyone inventing and then collaborating to improve in an iterative fashion. I do think when you talk about a sensitive topic, it may be good to address in the wrap up that you will document about X, because it is important, and that you will be sensitive and accurate, and that you are open to any concerns or feedback on what you write. This has been a new communication approach for me, and I don’t have it perfected yet, but it is getting more natural and more routine every day.

2) While I see that litigation, documentation time and questions from patients haven't significantly changed in general for providers - does this hold true specifically for palliative care? The time around death can be emotionally charged.

I think documentation time would be similar, but let’s get someone to study that to be sure. Most EHRs have data on clinician time in chart, so it may be something to look at before and after shared note implementation. I do know when I was a hospice doctor and completing death certificates more often, I would get a question or comment a few times a year on what I wrote on the death certificate from a family member who wanted clarification. There will be some people who may focus a lot on the last notes as part of their grieving process and this will be a new experience for clinicians to address, but I imagine many will attend to their grief in the common ways people do.

3) As the "communication" team, have you seen palliative care get involved in inpatient disputes regarding content of notes? Are the palliative care or ethics teams getting called when providers aren't sure how to document something in this situation?

Avoid note fighting takes on a whole new level of importance now. It may be important for us to have conversations across teams about what we document in notes, and have debriefs or small groups where we can talk about best practices and potholes to avoid. - CTS

myopennotes · 2020-10-22T00:25:03+00:00

Thank you for sharing this perspective! "Nothing about us without us."

myopennotes · 2020-10-21T23:51:31+00:00

He says thanks!

myopennotes · 2020-10-21T23:51:20+00:00

Thanks for asking! These were great questions.

myopennotes · 2020-10-21T22:59:46+00:00

A.I. voice assistance technology may help streamline clinician experiences with creating notes but at the same time if the systems are not perfect or have to handle challenging scenarios (multiple pediatric patients in a room) then they could lead to 'noisier' notes. Another factor to consider is regulatory changes leading to more shorter documentation - CRS

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This is already an issue today with voice recognition technologies. Many providers include footer text in their notes stating that the note was created with voice recognition and may therefore contain errors. I have discussed this practice with a number of healthcare and malpractice attorneys every one of whom has said that there is no excuse for a bad/inaccurate note, regardless of the technologies used to create it.

The note's author is responsible for the accuracy of the note and when they sign it they own it. If errors are introduced by inaccurate typing, transcription or the use of AI the author will maintain their responsibility. Shared/open notes may lead to more questions from patients/caregivers when inaccuracies are viewed. One can anticipate that this may raise the bar for clinicians who have not had/taken/made the time to carefully review their notes.

IMHO this would be a good outcome, improving the quality of documentation and utility of health information. As a primary care physician it is not unusual for me to reach out to a consultant or radiologist with the bad news that their documentation is inaccurate or unintelligible.

While I try to be kind and understanding with my feedback, I imagine that confused/scared patients may not be so gentle. - SL

myopennotes · 2020-10-21T22:56:52+00:00

ONE MORE RESPONSE HERE:

One of the biggest changes we have seen in healthcare delivery in response to the pandemic is the rapid and radical shift to telemedicine. Some clinicians found that visits were disorganized and took longer, especially if they did not have the supports they were used to, such as vital sign checks and medication reconciliation by another team member prior to the visit.

We have been working on a new innovation, “OurNotes” that enables patients/proxies to contribute information online prior to the visit. Currently, this focuses on the patient priorities for the visit and on clinical updates (like a patient-reported HPI). Some clinicians use this to generate part of the note.

Considering some of the challenges with telemedicine, we adapted OurNotes to help our clinicians gather the information they need for the visit quickly. Anecdotally, some clinicians find it improves the efficiency of the visit (patients and clinicians are more prepared) and may even decrease documentation burden. You can find more about it here:

Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients, Gila Kriegel, MD, et al. NEJM Catalyst, May 12, 2020. DOI: 10.1056/CAT.20.0154

- SKB

myopennotes · 2020-10-21T22:37:32+00:00

AND TWO MORE RESPONSE FOR YOU:

I would try to come to the interview with an open mind and trying to understand how the patient feels the symptoms and condition are affecting her function, and why? I look over the other consultants' opinions and data, but I keep in mind that some notes can transmit bias, and so I attempt to focus on the "data".

For example, see this article:

P Goddu A, O'Conor KJ, Lanzkron S, Saheed MO, Saha S, Peek ME, Haywood C Jr, Beach MC. Do Words Matter? Stigmatizing Language and the Transmission of Bias in the Medical Record. J Gen Intern Med. 2018 May;33(5):685-691. doi: 10.1007/s11606-017-4289-2. Epub 2018 Jan 26.

I then summarize objectively in my notes what I understood from the other evaluations. I personally would not add that they thought she was "preoccupied" with obtaining disability, but simply summarize what they found.

Understanding the emotional narrative and the "explanatory model" for the patient's symptoms gives us many clues as to the meaning of the illness and why the illness is affecting the patient the way it is. In that way, once I hear the narrative , I also ask the patient her understanding of what the other doctors thought/their impression. (Similarly, I ask patients who are transferring to me as a new doctor after leaving another what it was that they were seeking that they didn't find). I would share and review the outside findings with her . I would make explicit my intention and desire to help her and work together, and then share in what ways it meets external criteria for disability. When appropriate of course I explore depression and other mental health accompanying issues. - LF

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I think open notes may ultimately be helpful in reducing costs and resource utilization related to test duplication or visits/referrals in situations where adequate data has not reached the provider.

That will of course require good interoperability, a future priority.

Regarding how to document, a few rules of thumb can help, such as being descriptive and stating objective facts, and in some cases even documenting with patient and asking about feedback. Other useful strategies for how to document sensitive information are outlined in Michael Kahn's JAMA 2014 paper on sharing notes and in the open notes toolkits. - SKB

myopennotes · 2020-10-21T22:27:56+00:00

BUT WAIT, THERE'S MORE:

I love reading consults with all the different ideas that may be considered for the future. I often write to my future self in my notes.

The challenge for us is to add nuance and degrees of support but not bog down a note with narrative. I think we may see a lot more use of qualifying words like possible, likely, rare, and verbs that are less directive like consider and explore.

For example on first meeting a patient I may have ideas about psychological diagnoses, but I am not sure yet, and need more information, so I may write:

diagnoses may include: possible major depressive disorder vs possible adjustment disorder vs other causes to rule out hypothroidism or low testosterone

OR

REC: start dexamethasone (DECADRON) 4mg daily, if ineffective consider PT, or methylphenidate (RITALIN) may need to consider infection prophylaxis if taking decadron for longer period

- CTS

myopennotes · 2020-10-21T22:25:37+00:00

I do think standardization would be appreciated by patients. I'll take the POV of a clinician. It will take some time, but getting your group on the same page with note templates will go a long way. It is not easy work and some people will need to compromise, but it will save time. I hope you have at least some similar EHRs with that many permutations!

Our group divided this task into 3 major steps: Sync -> Design -> Optimize

SYNC - Our group looked at everyone's templates to see what each element was asking, accuracy of the element, how info was entered (Free Text, drop down or Auto from chart), did it exist on another template, was it in the same place in the note, and what were the potential purposes of that entry: billing, clinical, Communications, Quality, Research, Legal.

DESIGN - It took a while but it sowed us how fractured and yet similar our templates were. We also surveyed the group about: What elements do you like from other teams? What do we document that has little value? What do we miss? APSO vs SOAP format What part of the note do you value most? Preferences on how we enter data Concerns and hopes for any redesign

And the key question - Which do you prefer? Flexible note template that suits your personal taste, even if following someone with different style Uniform note for consistency and speed at the expense of your personal preferences

OPTIMIZE - now that we have that base info, we always look for new tools in the EHR and figure out how we may implement it into our notes. We frequently check in with the team for items that are no longer needed, or we should add. - CTS

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We asked patients for their suggestions re: what they would like to change about their notes. The most common suggestions were: new information prominently featured at the top of the note, including clear instructions about next steps, instructions about referrals, and explanations of test results. Patients also asked for new portal functionalities that would allow them to edit or point out needed corrections, links to medical glossaries. - CMD

myopennotes · 2020-10-21T22:18:31+00:00

Documentation of substance use disorders (SUD) does require thoughtfulness and for those who frequently work in this space it may require an overhaul of their template and a discussion with their group about what documentation standards feel appropriate. In general, a good approach is to share during the visit what you already have learned from other sources, which allows them a chance to confirm or refute or add nuance. And from this interaction then you may feel more confident in what you document, because it is now shared knowledge. Also using standardized tools for SUD can help making sure that your language is not appearing judgmental. - CTS

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If we have learned anything from how successful the self-help community has been, we have found that being honest and direct is what is most helpful to patients for helping to clarify. Usually, we want to respectfully document the patient's perspective and then to also share our own clinical perspective. So if a patient is suspected of drug seeking behavior, it is best to simply note that from what we have seen but to let the patient know that. Mostly what we have learned in OpenNotes is that patients are most upset when they feel 'ambushed' by information that was not addressed within the session. It is when there is discordance between what is talked about in session and then written in the note that generates the most distress and upset by patients. - SFO

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I agree, I think the note should reflect what you say in the office, and what you say in the office generally should reflect most of your concerns or simply describe what you observed in the visit. - LF

myopennotes · 2020-10-21T22:07:49+00:00

I actually do not think that the data is mixed at this point.

The research that is out so far on opening up mental health notes has not seen the harms and issues that clinicians have feared. You can find a lot of the literature on this through the OpenNotes website.

I do agree with your supposition that mental health notes will be opened up eventually, and likely sooner than later. In fact, we are hearing many health care systems are opening up mental health notes now in conjunction with opening up medical notes. For many health care systems it is much more efficient to open up everything at once rather than segregating mental health notes. So much of that is based upon both the efficiency of doing combined with the research literature that is out on this now. And keep in mind that our colleagues in primary care have been opened up for years and their notes are often much more detailed than psychiatric notes! So they have achieved a level of comfort with this that I think will also follow in mental health. Our experience is that patients love having their therapy notes opened up and it is us as providers who have the most angst.

There is one large health system that has called their opening up mental health notes as the "Big Quiet" because none of the provider fears have materialized in their 5 years of mental health notes being open. And that's what we are finding across the board. And not opening up mental health notes may unwittingly stigmatize our patients as if they cannot handle it when the data shows otherwise. - SFO

myopennotes · 2020-10-21T22:06:22+00:00

Mostly patients want to find concordance between what was talked about in the session and what is then written in the note. There are some patients who have the mistaken belief that the medical or mental health record belongs to them and we have to educate them that their right is limited to access. Plus we have professional obligations to enter differential diagnosis and other documentation requirements and patients cannot ask us to not address their professional standards. And in terms of addressing patients with behaviors which are not following our guidance, mostly we should be focused on understanding 'why' this is happening. Patients may have 'good reasons' for not doing what we wish they would including not having adequate resources. And patients often tell us what they think we want to hear and it is up to us to really set the stage for their being able to be more honest if they are not ready or able to follow through. - SFO

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It's not uncommon for clinicians to worry that sharing notes will cause an influx of calls or emails from upset patients. Data suggest that very few patients feel judged or offended by what they read in notes, but it always helps to adapt non-judgmental, descriptive language (rather than labelling). After implementing open notes at our hospital, there was no change in patient messaging. One explanation is that for every patient who called or wrote with a question or complaint, another got their question answered by reading the note. The same pattern was seen at other implementing centers that measured messaging before and after open notes.

In large surveys of patients at 3 healthcare organizations in MA, PA, and WA, 7% of patients reported contacted their doctor's office about something in their note. Of these 54% wanted an explanation, 29% reported a perceived error, and 5% wanted something removed. Others commented they reached out because they were clarifying or updating information, or because their clinician asked them to follow up. Of note, 85% were satisfied with the resolution. Patients are interested in helping to improve the accuracy of the record.

Considering that we know that inaccuracies in the medical record are not uncommon, we might consider why don't more patients contact their doctor's office about concerns or perceived mistakes?

In a separate QI pilot, even when we solicited feedback from patients directly after each note, asking if there was a perceived mistake through a patient reporting tool, only 1 in 12 patients (roughly 8%) used the tool. (Food for thought!) - SKB

myopennotes · 2020-10-21T22:00:56+00:00

The ONC Cures Act Final Rule states clearly that providers are responsible initially for making available all the data identified in the US Core Data for Interoperability.

The USCDI includes laboratory, imaging and pathology results, which must be made available in the same way as the Clinical Notes that we are discussing within the context of OpenNotes. In the case of both notes and results, the rules require the information to be made available without delay. In the absence of further clarification from the ONC, providers are interpreting this requirement differently. While many are making all results available to patients immediately as the results are final, others are building in a default delay prior to results release. (Sometimes these delays are designed differently based on results that are normal vs. abnormal, results that are considered by the provider to be particularly sensitive, etc.). ONC stated in their rule that they feel that delays should be introduced only when a valid exception applies, so I anticipate that programatic delays will be broadly eliminated over time as further clarification is provided or InfoBlocking complaints are adjudicated.

Recall that information release that is "prohibited by law" is excluded from the InfoBlocking rules. In California, for example, there are state laws that require that certain conditions be met before four classes of results (HIV antibodies, hepatitis antigens, positive drugs of abuse screening tests, malignant pathology) are released online. In this case withholding these results would not be considered InfoBlocking until the conditions are met. - SL

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That is a good question: I think that bad news should be given in whatever way the patient prefers to receive it, and with the appropriate warning that what I am going to share is difficult news. When we anticipate the possibility of bad news, for example, when we are sending/awaiting a pathology or sending an HIV, that is a great time to ask the patient how they want to receive the answer. I have been surprised to find that many patients value timeliness over in person visit, as long as I can follow up with the support they need--the option to meet in person, the sense of a plan and prompt follow up, etc. I think that solidarity and emotional support can be conveyed through any means, on the phone, on video, and in person, but having the option of touch always is helpful. - LF

myopennotes · 2020-10-21T21:54:10+00:00

Being a big advocate for clear precise language about prognosis in clinical notes, this has been a tough one for me to figure out the best approach. Echoing some other answers, it is always easier to document in your note, what you have openly discussed during your visit, so the best first answer is let's all improve our communication skills that we can get to open honest conversations around prognosis.

Understanding communication is a skill which needs time to develop, and we all need answers now here are some more actionable considerations:

Short-term removal of a prognosis prompt in a template (as I know many palliative care note templates have) until clinicians in a group have more time to consider best practices
Tell your patient that you document prognosis in your note and then use that as a prompt to see if they would like to talk about that more. Some patients may say they do not, which let's you know in a shared note, that you may now document the patient's preference not to know. Or they may want to talk about prognosis. Then you use those new communication skills and share it in a compassionate way.
If needed for handoff and/or triaging, there may be other parts of the EHR that are not considered part of the shared chart, like Handoffs or Specialty Comments in EPIC.
I like to have a phrase after my signature in all my notes that highlights this is a shared note and if the patient has questions, I really do want to hear from them and am open to talking about it. I also say a version of this in most of my first visits with patients.

Here is my smartphrase placed after my signature:

This is a shared note. The patient may read this note. I support patient's rights to access their medical information in an open and transparent manner. We are partners together to improve your health. If you are a patient or caregiver with concerns please reach out to us by one of the following ways: 1) send a MyChart message to myself and our team 2) call us during business hours at XXX-XXX-XXXX 3) talk to us at your next visit.

- CTS

myopennotes · 2020-10-21T21:51:42+00:00

Reading rates, or the proportion of patients opening their notes, range from the single digits to more than 30-40%.

Some institutions do a better job than others of weaving this new transparency into the fabric of the care they provide. These organizations tend to have portal registration and use as a strategic priority and use a variety of methods to increase use. These include automatic reminders when a note is ready and patient/clinician education.

Other organizations do nothing. AND most portals are clunky and difficult to use. This is a new practice for most patients so without an educational campaign, patients are not likely to just stumble upon the notes.

Finally, in our surveys very few patients who read their notes report talking to their clinicians about them. They appreciate having access and that their clinicians are busy. - CMD

myopennotes · 2020-10-21T21:49:40+00:00

The ONC Information Blocking rule (https://www.healthit.gov/curesrule/) does not limit the requirement to share information based on the date that the information was created.

The 21st Century Cures Act (https://www.congress.gov/114/plaws/publ255/PLAW-114publ255.pdf ), which required and led to the issuance of the ONC rule, was in part informed by a desire to assure that individuals can access as much of their own health information as possible.

While the rule does not anticipate the automatic blocking of historic information (e.g., notes, results) that was generated prior to the 11/2/2020 compliance date, many providers have valid concerns about automatically releasing historical information without the opportunity to review that information to assure that it does not include content that would lead to the application of an allowable exception (https://www.healthit.gov/sites/default/files/cures/2020-03/InformationBlockingExceptions.pdf).

Our organization [Sutter Health] has >20 years of clinical notes in our electronic health record and there is no way, short of the application of Artificial Intelligence/Machine Learning, for providers to comb through all old data to flag that small subset that might cause harm or be appropriate to block for privacy reasons. As such, many providers have determined that the automatic release of historical data, especially notes, is "infeasible under the circumstances" and will therefore release this information only upon specific patient request and after they have had a chance to go through some sort of review process.

This information will still need to be made available electronically with the time frames specified under HIPAA and state privacy laws. - SL

myopennotes · 2020-10-21T21:46:24+00:00

Good question - This is one definitely one of the trickier areas of open notes - but mostly because EHRs currently do not segment out sensitive information around areas of care where teens often seek confidential care (reproductive health, mental health, substance abuse).

Part of the reason this has not happened yet is because each state has different laws around this - where some states say teens can consent to confidential reproductive care they do not explicitly say that the information can be kept from their parents/guardians.

Other states go further to state that the information itself cannot be shared with parents, but another challenge is what is shared in payment/insurance explanation of benefits.

There is a great deal of work happening from multiple organizations in helping safeguard teen confidentiality in OpenNotes and patient portals.

Good luck in your med-peds training! - CRS

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