This was one of the areas of greatest concerns for our clinicians. We have found that requests are infrequent but we use the following processes:
1. If the clinician agrees with the patient request to update information, the clinician will directly revise or addend the note. This generally happens when there is an inaccuracy or mistake in the note that requires correction. This is the most common request we see.
2. In circumstances where there is disagreement between the patient/family and clinician related to the request, the clinician can choose to add an addendum that reflects the patient/family perspective.
3. If there is ongoing disagreement, we have a formal process that is managed by our Health Information Management team. This is very rarely used, as the request can usually be addressed by the first 2 processes.

To add onto Fabienne's excellent response, we have had a few rare instances where a patient requests that something be changed such as a diagnosis which the patient disagrees with. When it has come up, it has tended to be with patients with, depression, psychosis or else ETOH/substance use disorders who do not see themselves as having any of these conditions. We have found that when we document the patient's perspective while also documenting our own professional judgment that our patients have accepted that when it has been explained. It usually involves a discussion around professional documentation requirements, including differential diagnosis. Mostly patients do not want to be 'ambushed' by information that they were not aware of. So using quotes is always helpful in capturing the patient's perspective and discussing the diagnostic possibilities helps a lot. And if it is after the fact, then adding an addendum to your note to capture the patient's perspective has been quite helpful. Editing the note has only done though in our system when there is a material mistake as addendums have usually sufficed.

The first thing it's important to mention is that if a clinician encourages their patients to read their notes then it's much more likely the patients will. If patients do not know that there are notes available for them to read online they won't know to seek them out. We can certainly talk about the digital divide and the fact that some people have smoother access to the technology needed to utilize patient portals, but it's become easier and easier to access them using apps on phones, and that has made them more accessible to more patients. So do not underestimate your patients or make assumptions about who would or would not benefit from reading their notes. Studies have found that more vulnerable patient populations report greater benefits when they do read their notes (for example: ncbi.nlm.nih.gov/pmc/articles/... ).

In our study of ambulatory mental health patients note reading rates, almost all of our patients at Beth Israel Deaconess Medical Center read their therapy notes. However, for patients in ongoing therapy, the read rates dropped with then intermittent reading. When queried about this, our patients noted that the notes were often fairly redundant which is often true. And across the board, patients were largely looking for concordance between what was discussed in the session and then written about. So for many patients this brought clear relief and strengthened the trust. This has been shown on the medical side too.
There were a few patients who chose not to read based upon certain fears or anxiety. Some worried that the note might confirm their internal belief of being a "horrible person". And some obsessive patients worried that reading the notes might foster further obsession or anxiety. And even then, the notes served as an extension of the treatment. The same can certainly apply on the medical side too.

Yes, that is a non-answer. Here is something more substantial.

Our read-rate runs about 20%-ish. In other words, about 1/5 of patients who are offered access to Open Notes will open the note. This is both great (wow, that is more than the single digit rate in past years) and terrifying (wow, that is a lot of people). Nevertheless, the fraction of patients contacting us with questions or comments is very very small by comparison. For example, our Health Information Management (medical records) department noted that, PRIOR TO Open Notes, with about 1 million active patients at the time, we would receive 5-7 requests per week to change something in their medical record. In the months AFTER Open Notes, the request rate was ... 5-7 per week. No change.

Also, analyzing across departments, our read-rate in psychiatry runs a few percent higher than in medical/surgical practices. Since we have turned on inpatient note access, we have not analyzed the read-rate, but anticipate it to be pretty low, because it is more difficult for patients to navigate to those notes than for clinic notes.

As for any criticism that "Open Notes are just for the worried well", we have data going against this. In our initial SPPARO study back in 2003, we showed that some of the most frequent users of our patient portal back then died during the course of the study year. Aside from the spurious conclusion that portal use caused their demise, this indicates that even sicker patients found it useful enough to access the portal frequently.

Our organization and many others have posted test results to our patient portal for years. Historically these postings were often delayed through various mechanisms, e.g., awaiting clinician review/release, for specific periods of time based on Normal/Abnormal status, based on local or regulatory determinations of "sensitivity" of a specific result. With the applicability of the Information Blocking prohibitions our and many institutions have removed some or all of the barriers to access, beyond those clearly required by statute.
Our organization, like many which have the technical capability to do so, has implemented options for individual ordering providers and other users to block the release of certain results when one of the Information Blocking exceptions applies (e.g., the Harm or Privacy exceptions or when release is prohibited by law, as is the case in California for a small number of results when they have not yet been discussed orally with the patient).
With these changes has come significant concerns from many providers regarding the emotional distress that some patients experience when receiving bad or unexpected news through the automatic release of a test result without the prior benefit of direct communication from their clinical team. This concern has recently led the AMA to formally recommend that HHS expand the definition of harm in the exception to include emotional harm, especially in recognition of the fact that emotional distress can lead to physical harm/disease.

In my practice I now routinely inform patients that their results will be available to them in their portal as soon as they are finalized and that I will reach out to them with my commentary/interpretation/recommendations as soon as I am able. When ordering a test, the results of which may be of great concern or even life changing it is appropriate to discuss with the patient whether they want to see the results immediately on the portal or would rather wait until we are able to discuss them. If the patient would rather wait it would be appropriate to invoke the Privacy Exception, not posting the result to the portal until the patient requests this. In our system we are able to make this specification at the time that orders are placed. While this creates an added task for ordering providers it respects the autonomy of patients, some of whom would rather receive results immediately, and provides an opportunity for providers to better understand patient preferences regarding information access. It would be ideal for patients to be able to specify in their portals whether they would prefer immediate vs. delayed access to their results generally, or at the provider or even individual result level. Patients should also ideally be able to specify whether and when they would like to receive notifications of the availability of new results or other information in the portal. While every patient has the power to determine whether/when they will go to look at their data, receiving an unwanted alert of the availability of new information could make it hard for a patient to wait to go view it, especially in situations where a result might have significant health implications.

Agree with Dr. Lane about requesting that our EHR vendor create a setting for patients to specify how/when they would be notified about new results "A. I would like to be notified immediately when the test result is available. I acknowledge that this may be before my provider has seen this result. B. I would like to be notified ONLY when my provider has sent me a message about this result."

Separately, we have spent time educating our providers that, because of the immediate release of results that could convey information about a serious disease, we should spend the time, when ordering a test to briefly anticipate such results: "I'm ordering a CT scan today because of your symptoms. Although unlikely, In the worst case, this could be cancer. If it is cancer, here is how I would reach out to you... If it is something more benign, here is how we would take the next step."

Good question! Most often providers don't get any direct feedback about notes. Providers often find that patients are more engaged and come to visits more prepared after reviewing notes. So one type of indirect feedback will be engaged patients! Providers do sometimes hear from patients if they disagree with something written in the note or if they notice an error. The health system should have a policy in place for how to make note of patient comments regarding the note, especially if they disagree with something. That doesn't mean the note has to be changed but there can be a way to indicate the patient's perspective. If there is an error then there should be a process for amending the note or making note of the error so that the same error isn't continued or carried on throughout the patient's record and passed on to other clinicians. Providers also do sometimes get positive feedback about notes when patients see that the clinician listened to them and reflected the visit and the patient/doctor communication in the note. To see some studies about patient-detected errors in notes, go to the OpenNotes research page and look for papers relating to quality and patient safety: opennotes.org/research/

As Deb mentioned, most of our providers never hear from their patients about the content of notes. Occasionally, patients/families will reach out if they notice an important inaccuracy in their note or, rarely, if they disagree with their provider with certain content in the note. Most of the inaccuracies are updated by the clinician. In the case of significant disagreements with the content, our providers will generally add an addendum to the note to include the parent/patient comments. If there is ongoing disagreement, we have a formal process through our Health Information Management department, who will serve as the arbiters in the process. There have been a couple of studies (initially at BIDMC, and then at Boston Children's and Atrium Health) where patient/family feedback on note inaccuracies was solicited through a survey link either in the email notification to the patient or a link directly embedded in the note. Most of the inaccuracies were in relation to medication lists, problems, report of symptoms (HPI), but also included wrong-sidedness and notes documented on the wrong patient. The majority of patient reported inaccuracies were corrected by the clinician (60-70%). During the study period only two reports went through a formal HIM arbitration process. Additionally, a few patient queries were related to clarifications of discrepancies between what they remembered or heard during the visit in terms of the next steps (medication dose changes, labs, follow-up, etc.) and what was documented in the note by the provider.

When we opened up psychotherapy notes at Beth Israel Deaconess Medical Center directly to patients in 2014, we found that both our patients and our therapists were each waiting for the other to ask about the experience of seeing their therapy notes! So neither one brought it up! It's not surprising when one considers that most therapists are trained to go at the patient's pace. And yet I think that it points to the importance of health care providers, irrespective of discipline, initiating the discussion since most patients will not. And as is already well noted, it reinforces the importance of patient engagement in their own care.

At my institution, Kaiser Permanente in Southern California, with over 9000 clinicians and 4.7 million patients with access to their notes we don’t have a formal process to address patient concerns about notes that Deb and Fabienne discuss. We have left it up to the clinician to correct the problem, and it seems to work.
For example I just heard yesterday of a patient who had a colonoscopy recently where a polyp was discovered, and her gastroenterologist had told her she needed to repeat it in 3 years. When she reviewed her notes it stated that the repeat would be scheduled in 5 years. She contacted the clinician, who apologized, thanked her, and corrected the problem. This kind of feedback will be welcomed by all clinicians, since it supports the shared goal of high quality care.

Although our providers were quite concerned about the anticipated volume of patient responses, we, like everyone else, rarely heard from patients. In my practice, my patients do comment that "I did what we agreed from last visit" and that works well. When patients do request a change, if it is a spelling error, I usually tell them, with their permission, I would prefer to make my next note accurate rather than spend time correcting spelling or other errors in my previous notes UNLESS there is a risk to misunderstanding or possible effect on their medical care. When explained in this way, patients are very understanding.

I agree with everything mentioned above, and will flag this interesting study...

Published in the Journal of General Internal Medicine in 2020, researchers examined patient VIEWS of open progress notes. Researchers wanted to know: "to what degree the patient recalled understanding the note, whether it described the visit accurately, whether anything important was missing, for suggestions to improve the note, and whether they would recommend the authoring clinician to others."

The big conclusion was: "Patients overwhelmingly report understanding their visit notes and usually find them accurate, with few disparities according to sociodemographic or health characteristics. They have many suggestions for improving their quality, and if they understand a note poorly or find inaccuracies, they often have less confidence in their clinicians."

Check it out: Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation. Find it here: link.springer.com/article/10.1...

Before the April 5 go-live date of the Interoperability & Information blocking Rule, there were 260+ health systems that opted-in to sharing open progress notes. While we don't have a ton of data about what has been happening over the last 2 months, we can share what we know about the 260 organizations who did open notes before it was a mandate...

None of the past open notes organizations reported a significant increase in visit time with patients or in e-mail traffic. In fact, some organizations reported a decrease in e-mail, as patients were able to resolve confusion or forgetfulness by reading their notes.

The one workflow issue that requires short-term changes involves documentation. According to “Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects,” published in The American Journal of Medicine, 15-20% of clinicians will begin making modest changes in their approach to medical records. While these changes are typically small, some clinicians do report spending more time in documentation after implementing note sharing.

Overall, most organizations perceive these changes, which are quickly integrated into workflow and are usually not an issue after four to six weeks, to be positive

THAT SAID, it is important to not conflate open progress notes with open TEST RESULTS. We've been hearing about an increase in concerns/questions from patients with immediate access to test results; which is required as part of the Rule. The OpenNotes team did not study open test results, just open progress notes.

Time will tell.

To add onto Liz's thoughtful and thorough response, I would add that the workflow within the Mental/Behavioral Health side appeared to have improved quite a bit. As the manager overseeing most of the mental health programs at Beth Israel Deaconess Medical Center, I saw some dramatic improvements in staff being less delinquent in doing their notes and in being more concise in their documentation. As an example, several staff who routinely took 18-25 minutes per progress note were able to cut their time when they realized that the group average was 7-9 minutes. This was a small sample with 29 staff and not something which I formally researched. But as a manager I think it improved a lot. And I also saw a decrease in some of out labor intensive patients' calls to the practices since they were often referred to their visit notes for what they wanted. This is not well studied though and may be something to consider researching more on.

We teach our docs that the vast majority of time, no change is needed to the note. Patients expect that they are peering into the medical process and that medical terminology is expected; these are notes written by providers for providers. When we asked our patients "We are showing you the Wall Street Journal" version of the record, do you want us to build you a "USA Today" version of your record? Their response: the most important thing to me is the actual medical record, so I can share it with other providers who might not have access. I want to have a REAL copy of my records. The 'pretty' USA today version is a "nice to have" by comparison.

Also, see my one page "How to write an open note" that is posted on the Open Notes website, for recommended changes in sticky situations, 1% of the time.

While my personal notes have been "open" for some time, this was part of a pilot with a limited number of providers at our institution. As such, I did not make a big deal of this with my patients, as I did not want to engender questions about why other providers' notes were not similarly available. Now that all providers' notes are available to patients I have begun telling patients at the end of each visit that they will be able to review everything I have written down during our visit, and invite them to review it and provide me with any feedback or corrections. Despite this invitation I still hear NOTHING in return.
In my practice I document in real time while in the visit with the patient. Reassuring patients that they can review everything I am writing I think helps to obviate potential concerns that I am focusing too much on the computer and not enough on them. Patients understand that the computer interaction is to review and document their concerns and that they will walk out of the visit with all of the information. I strive to complete and "close" my encounters before walking out of the room. It is great fun when, upon closing my chart, I hear the patient's phone buzz telling them that they have a new After Visit Summary. I regularly comment, "There you go; now you have everything that we just discussed as well as all of your instructions, right there in your phone."

I can’t pretend to know what the technology will look like in 10 years. What I would love to see is health care organizations making a real and sustained effort to help patients engage with their information. The information making blocking rule is a great first step, but we will not get the benefits of transparency until patients are accessing their information and using it to make decisions and engage in their care. Other efforts such as optimizing notes, accurate translations, feedback mechanisms to report errors, etc, are all important innovations, but we HAVE to get to the place where many patient and care partners are using their information in order for those innovations to have a widespread impact.

Thanks Cait. I think I heard that there are EHR tech folks on this conversation. I was wondering if they are thinking about how to leverage opened notes to make EHRs even better. Any EHR gurus out there?

As a CMIO, I think about this a lot. We are at the basement/first floor of transparency that will eventually be a big skyscraper. We are finally done with "is it harmful to share notes and results?" and now we must ask the question: "What else can we do to make patient and provider experience better using transparency as a foundational tool?"

Elsewhere on the internet, Amazon.com knows me and allows me to order books from independent used book sellers WITHOUT my having to enter my data again: it makes that interaction seamless.

In healthcare, what if:
* I could send my results and notes to a Health Insurance Exchange and have it tell me: which plan is LOWEST COST FOR ME based on my last year's use of medical care, prescriptions, etc?
* I could choose a hospital or provider based on lowest cost of care AND quality metrics AND highest volume AND lowest complication rate?
* I could send my data to another organization and get an automated second opinion whether my care is "on track" for all the best-practice for my conditions/ disease, and send me back recommendations I could show to my provider? I could be a conduit to partner with my provider on getting best-care.
* I could see my genetic data and combine it with anticipated new medications
* I could easily share all my diagnoses, meds, allergies with other patients to create a global community for patients with diseases like myself and build my own collaborative research group and offer our services to researchers OR BECOME RESEARCHERS OURSELVES.

See my attached slide from a talk I give: What if we could learn from Travelocity and E*trade and 23 and me and Wikipedia on how to share data usefully for patients?

While patients have long had a right to access their health information under HIPAA, this was a laborious and therefore rarely utilized process through forms completed and requests sent to the provider office or Health Information Management department. Now that patients have real time access to their health data through patient portals, View, Download & Transmit requests, and increasingly apps making requests for health data via APIs, the entire landscape promises to change. This change will happen in increments, as patients, caregivers and other stakeholders become aware of and utilize their new electronic access, as the scope of the ONC Information Blocking rule expands to include All Electronic Health Information in October 2022, and as health IT developers provide more robust tools to access, download, aggregate and make meaningful use of the available data.
I anticipate that 10 years from now things will look VERY different as stakeholders have access to all their data in machine readable format and have made this information available to apps and other services to analyze this data in conjunction with other data sets, leveraging artificial intelligence and machine learning and decision support tools, to surface new insights, recommendations and interventions. What will be the role of physicians and other clinicians in this brave new world? I can't wait to see!

CT and Steven: I agree, big changes are needed and are surely coming. The pace is also likely to increase very quickly. Look how quickly the concept of OpenNotes went from a new idea about 10 years ago with a couple of brave pilots, to a movement sharing notes with 40,000,000 patients about 5 years later, to opened notes now required of all 2 years after that. Now that the control of patient’s healthcare information has moved from the doctor to the patient, there are going to be amazing synergies as you both anticipate.
There will also be false starts, misuse, overhyping and probably hacking, data theft (ransomware?), and scammers, as has happened in other new area of digitalization. Given how late medicine is to the party, we should expect these and plan ways to prevent them from the earliest stages, given the unique importance of medical information. Safety, quality, privacy, convenience, trust and equity should all be balanced as the healthcare informatics of the future is developed.

Short answer: That is up to the healthcare provider's clinical judgement on a case-by-case basis.

Long answer: Under the Cures Act, only electric health information that may reasonably lead to physical harm may be blocked. The healthcare provider generating the clinical documentation is appropriately positioned to make this determination from a clinical standpoint. A commonly cited example is the situation where a healthcare provider documents in a clinical note injuries that occurred in a patient as a result of domestic abuse; should the patient's proxy who is also the abuser see this documentation then the patient could be at risk of additional physical harm. The law is clear that emotional distress does not meet the bar and health information cannot be blocked to prevent emotional distress.

The 'answers' which Dr. Rosenbloom provides are very well grounded, especially with the domestic violence example. Another area of concern this good question raises has been when patients see their labs/results in advance of their clinician. Most clinicians would prefer to see these first, especially if it might be 'bad news' and then communicate directly with the patient a thoughtful plan to address the 'bad news'. Given that patients will now have more immediate access to these results, many clinicians are working more directly with their patients to sort through how to approach this issue. Some patients prefer to see the results themselves first while others would rather not. So explaining to patients about what works best beforehand seems quite helpful. That can involve more labor initially but may help to mitigate panicky calls from patients if there is already a plan in place for how to work together.

It would be ideal if patients had more control over what information they receive, when, by what method and in what format. While discussions between clinicians and patients can help patients to determine if/when they will access information online, new technical tools would also be beneficial. Such tools could, for example, allow patients to specify that they only want to see information in the portal after it has been reviewed and/or commented on by the ordering provider. Patients might prefer to get a daily or weekly summary/digest of all newly available information; perhaps organized by source organization or rather as a compilation of data available from any source. While EHR vendors can provide some of these tools and functions, app vendors could also potentially come to market with tools that harvest available data from EHRs, labs and other sources and compile/present data to patients according to their preferences and/or otherwise customized to their needs (e.g., preferred language, level of education/complexity, based on clinical condition, etc.).

Agree: Patients should have the ability to specify their preference in the portal: "Show me right away, regardless" or "I prefer to wait until I see a comment from my provider."

Patients have always had access to their notes under HIPAA and many health institutions' policies. Providers should always document objectively, respectfully, honestly. Otherwise, there is no requirement that providers change what they put in notes. Some have recommended avoiding language that can confuse patients on the basis of the words used, such as SOB, F/U and "patient denies".

I thought this was a good article that covers some of the provider language issues - statnews.com/2021/06/18/clinic...

I will let clinicians answer as to how/whether they and their colleagues have changed the way they write notes. We do often hear that changes that are made are for the better in terms of improving how notes are written. See more info about writing notes on this page (scroll down to Changes in Writing Notes section): opennotes.org/effects-of-openn.... Within that section you will find a link to this document: opennotes.org/wp-content/uploa...

Also this study is interesting when considering how notes are written and how they may bias clinicians: link.springer.com/article/10.1...

There are many providers who worry that OpenNotes will lead to double charting or re-languaging their notes. And there are times when patients ask that language be changed. While the Cures Act strengthens patient autonomy, we should not be sacrificing professional autonomy, especially in our respective professional documentation requirements. We have found that when these requirements are explained to patients that they appreciate and accept that, even if wishing that they had more control over what we do write. And a guiding principle has always been to write our notes as if the patient is perched on your shoulder seeing it. Many clinicians have reported that they have started to use more "plain language" which has helped them to be more expedient with their note writing. That transition may be a bit more burdensome initially but improves a lot over time.

Klein, et al., published some great recommendations in "Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects" in The American Journal of Medicine.

Print it and consider it a cheat sheet: amjmed.com/article/S0002-9343(...

One thing that clinicians SHOULD change about their documentation is to end the use of acronyms, abbreviation and jargon. As a primary care physician I cannot understand the majority of the notes written by my Ophthalmology colleagues. I can only imagine how difficult this is for our mutual patients. Most EHRs and clinical documentation systems include functionality to auto-convert acronyms or abbreviations into fully spelled out more patient-friendly terms. These should be utilized liberally. Eventually it would be ideal to automate this process, perhaps by offering a smart glossary which identifies commonly utilized text strings which often breed confusion and provide links to the fully spelled out terms and even longer explanatory texts to provide the context that patients need and deserve.

One thing we are actively promoting among our providers at UCHealth: the use of the speech recognition (SR) tool in the exam room with the patient. In my personal experience, using SR for history in the exam room is terrible: "Please stop talking now so I can summarize what you said to the computer". Same for physical exam: I'm not at the computer at that time. BUT for the assessment/plan, which is already a monologue by me, I can now say to the patient: "This is going to sound funny because I am formatting it for the computer, but you will be able to take a copy home with you today." THen I turn to the computer and speak into the "patient instructions" part of the chart, which prints on the After Visit Summary: "Assessment and Recommendations, new-line, Number 1. High blood pressure. Congratulations, your pressure is less than 130/80, which your goal. The lisinopril is working. Please continue. Here is what to look for next..." etc. Then I check for understanding after each paragraph. Then I print it out for the patient to take home AND it shows up on their portal.

This forces the provider to be aware that they are documenting since the patient is there listening. It is a win-win-win: for provider, charting in real time with less work later, for patient with takeaway printout AND listening to the advice in realtime, for the clinic, as the most important part of the note is ALREADY DONE for anyone else to see/use.

There is NO DOWN SIDE to doing this.

While the gut reaction of many clinicians seemed to be that allowing patients to easily view the progress notes documenting their office visits is a bad idea, in actual practice there have been surprisingly positive benefits and also surprisingly little problem in the organizations that previously implemented ‘OpenNotes’ or similar programs. At Kaiser Permanente in Southern California we did so in 2018 for our 4.5 million members and found many benefits and very few problems. Based on many studies of opened progress notes by the Harvard affiliated OpenNotes team and others, we see improved patient understanding and adherence to clinician recommendations; improved safety by allowing patients to find errors; and improved patient satisfaction with their healthcare team. The number of increased messages due to reading their notes is equally balanced by the decrease in messages to get information that can now be found in the reviewable notes. In general, implementation is a ‘non-event’ in terms of disruption but very well received by most patients. Clinicians also have in general supported continuing note availability, even when initially hesitant.

Adding on to Dr. Litman's response, Kaiser Permanente in Washington published a study in April 2021 "Changes in Clinician Attitudes Toward Sharing Visit Notes: Surveys Pre-and Post-Implementation." Paper open access link is here: link.springer.com/epdf/10.1007.... This paper mirrors the findings in Southern California.

Since OpenNotes was started on the medical side in 2010 and then on the psychiatric/mental health side in 2013/2014, the research has shown over and over that patients are more engaged in their care, feel more trusting of their health care providers, and find that the notes help to clarify many issues. The result is that patients may call your practice less often as they, or their care takers, can find the answer within their notes. And we have surprisingly seen that many populations who would not have been expected to look at their notes are doing so. This includes limited English proficiency patients, patients with less education, marginalized communities, and blue collar communities. Many thought that OpenNotes would only appeal to the well off and this has not been the case at all. And typically most health care providers, including those of us at the start of this journey, thought that we would see all kinds of confusion, anger and angst. If that had been the case, we all would have been hearing about that.

As a person living with a long-term, chronic condition (slow growing, malignant brain tumor), reading my notes is eye opening. My notes show my doctor and other members of my healthcare team are really listening to me. Sometimes they even quote me and my husband in the note. I love "seeing myself" in my note. My notes make me feel like my doctor really "gets" me.

For years, I've already had access to lab and test results--but what meaningful use is this information without interpretation? (See what I did there?) The notes provide context to the numbers and data that already appeared in my online patient portal for the last 15 years.

Sometimes I forget what my doctor said, or the next steps we talked about in the visit. Notes are the ultimate recap. And while sometimes I don't read my notes right away, I love to review notes to prep for my next oncology visit to remind me what we talked about the last time. Perhaps my doctor does the same as she prepares to see me again.

Today people Google all kinds of information about our health. What if our first search started with the information in our own medical records that is documented by our physicians (and other clinicians) and shared in the form of an open note?

UCHealth - Colorado has been Open Notes since 2016, and we did some of the original work back in 2003 with System Providing Patients Access to Records Online (SPPARO: you can google it). Back then, and since then, our experience is as above: significant concerns prior to go live, and nearly no concerns after go live. All of this groundwork was for outpatient notes. Since 11/2020, we turned on inpatient notes, including H/P, daily progress notes, consult notes, operative reports, discharge summaries, also with no significant concerns. This, despite the worry that 'daily notes' might have a lot of copy/paste, or have conflicting rapidly changing information, or inter-service disagreements. Instead, our patients also note "increased trust, increased adherence to treatment." as others have.

Also, the above note types are also shared, system wide. We have about 6000 providers now, all sharing notes with patients "by default." We have about a 10% "opt out" or "do not share" rate, where we have providers uncheck the box to share with patient. This is typically for "patient requests we not share" or other legal reason or "risk of harm to the patient or others."

We have had similar experiences at Boston Children's where we have been sharing ambulatory notes since 2014 and turned on the Inpatient, Behavioral Health and ED notes in February of this year. During both the go-live in 2014 and in February, the roll-out has been essentially silent, though we have heard about many of the benefits from our patients and families. In addition to all the benefits described above, our families have also reported benefits in reviewing the note later at home in order to remind themselves of the conversation or action items as the visit itself can be quite hectic, especially with a small child. The note also serves as a resource to share with another parent or caregiver who may not be at the ambulatory visit or the bedside during inpatient rounds. About 7-8% of the notes during any given months are denoted "confidential" and not shared based on one of the exceptions.The most common exception we're seeing clinicians use if the privacy exception. Typically this is due to an adolescent sharing information they don't want to share with a parent (substance use, sexual activity, etc.) or information a parent shares that they do not want shared with either the adolescent and/or the other parents.

As a primary care provider I love the opportunity to provide my patients with a direct view of the information that I collected from them, what I observed in their examination, the issues that i am addressing, and my plan and recommendations for each. This helps people to keep track of what we have addressed, what they need to do, and how we may need to follow-up. Having this shared understanding provides clarity, reassurance and a roadmap for future action. It also helps to avoid the need for follow-up questions and clarification and empowers patients to fully engage in and improve their own health.
After having my notes open to patients for many years I have NEVER had a patient question or complain about my documentation. I do, however, have patients send me helpful updates regarding their progress, let me know when their issues resolve, or when their treatment is modified, all increasing my ability to provide efficient high quality care.

The Cures Act does allow "information blocking" exceptions. In essence these break down to content, manner, privacy and harm exceptions. The general proviso is the patient has a right to health care information if it is electronically available. If that is so, the health care providers must provide access to computable information directly to a patient. However, as an example, if a patient requests that information via a secure web platform and the health care provider does not have such a platform then this would be deemed "infeasible" and an exception is allowed. And yet if that same info is available in another electronic format then the provider would need to offer that. If you are deemed a "covered actor" then the Rule requires you to make the note/health care info available in the format requested if feasible. Really this is largely HIPAA catching up with the computing age.

The 'Privacy' exception allows that if certain information was obtained under a promise of confidentiality (unless falling under mandated reporting exceptions which vary by state) that information can be blocked. A good example is when a parent/proxy can be blocked from seeing visit notes of a minor/adolescent. One can imagine the chilling effect on openness and honesty for any minor if they thought that a parent/proxy could see their visit note with info about sensitive matters discussed in session!

The 'Harm' exception allows for notes to be blocked when it might lead to physical harm to the patient or others. A common example of this is in the care of someone dealing with domestic violence where the perpetrator might access the note and the danger would escalate. And yet clinicians cannot simply block all DV cases as a 'group'. It needs to be done on a case by case basis.
These exceptions are spelled out by the Office of the National Coordinator. State statutes vary widely in all of these areas so it's good to get clarification from your own legal counsel.

To add to Steve O'Neil's excellent response above, the Office of the national Coordinator for Health Information Technology (ONC) has provided a handy quick reference to the eight exceptions identified in their 21st Century Cures Act Final Rule at: healthit.gov/cures/sites/defau...

As of the initial 4/5/2021 applicability date for the Information Blocking rules, the scope of the information that must be made available upon request is limited to those data classes and elements included in Version 1 of the US Core data for Interoperability (USCDI): healthit.gov/isa/united-states...
On or after 10/6/2022 the scope of the Information Blocking rules expands to include all electronic health information included in a provider's Designated Record Set, as defined under HIPAA: hhs.gov/hipaa/for-professional...
Note that individuals have long had a right to a broad array of health information about themselves maintained by or for covered entities, including: medical records; billing and payment records; insurance information; clinical laboratory test results; medical images, such as X-rays; wellness and disease management program files; and clinical case notes; among other information used to make decisions about individuals.
What has changed with the advent of the information rules is that patients and others with a HIPAA-valid request for information now have a right to receive this in a machine-readable electronic format as soon as the information is available, as opposed to having to submit a request for a release of information and wait for the information to be collated and delivered.