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Research & Initiatives
- Research
- Initiatives
- - OpenNotes Research
    Search for and review work conducted by OpenNotes faculty, scholars, and collaborators from a wide variety of settings in the U.S. and beyond.
  - Latest publications:
  - Tobias Esch: Integrating OpenNotes and promoting self-management in primary care in Germany: The Witten ModeApril 9, 2021
  - How Sharing Clinical Notes Affects the Patient-Physician RelationshipApril 7, 2021
  - View All Research
- - OurNotes
    “OurNotes” asks clinicians and patients to create notes together.
  - Patient Safety
    The OurDiagnosis (OurDX) Project is an online tool that searches for potential diagnostic breakdowns in ambulatory care.
  - EHR Proxy Access
    Engaging family caregivers through shared access to the electronic health record.
  - Learning Collaboratives
    Working to embed the practice of open notes into the culture of medicine.
  - OpenNotes Case Studies
    How do you “do open notes” well?
- - Nordic eHealth for Patients (NORDeHEALTH)
    Benchmarking and developing personal eHealth services for Scandinavia.
  - NYSHealth OpenNotes Collaborative
    Bringing open notes to a broad variety of patients in New York State.
  - Medical Records: documenting the social determinants of health
    Access, exchange and use of Social Determinants of Health (SDOH) data in clinical notes.
  - International Cross-comparisons
    Studying effective implementations of transparent records in Sweden, the U.S., and beyond.
For Patients
- For Patients
- - OpenNotes for Patients
    New to sharing? Find out what you need to know.
  - Reading Your Notes: FAQs
    Notes patients have shared with us and descriptions of how they were used.
  - Pediatrics & Adolescents
    Access to notes can help families and caregivers manage care.
  - Care Partners
    Open notes can be a tremendous resource not only for patients but also for their care partners.
- - Mental Health
    Reading mental health notes can be a powerful tool in therapy.
  - Patient & Family Advisory Councils (PFAC)
    For PFAC members interested in bringing OpenNotes to their health system.
  - OurNotes: Creating Notes With Clinicians
    OurNotes invites patients to contribute to the notes that document a visit.
For Healthcare Professionals
- For Healthcare Professionals
- Webinars
- - OpenNotes for Health Professionals
    New to sharing? Find out what you need to know.
  - Effects of Open Notes: FAQs
    Sharing notes improves communication, builds more trust, and enhances patient safety.
  - Federal Rules Mandating Open Notes
    Learn about the new Federal rules.
  - Implementation
    A toolkit for implementing open notes effectively.
  - Communications
    Materials for communicating with staff, clinicians, patients, and the public.
- - Pediatrics & Adolescents
    Access to notes can help families and caregivers manage care.
  - Care Partners
    Look at how open notes can be useful to both patients and care partners.
  - Care Partners
    Look at how open notes can be useful to both patients and care partners.
  - Mental Health
    How open notes can be a powerful tool in mental health therapy.
  - OurNotes: Creating Notes With Patients
    With OurNotes, patients are writing notes with their clinicians.
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- About OpenNotes
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- - About OpenNotes
    Learn more about the OpenNotes organization.
  - History
    Our History: Fifty Years In the Making.
  - Supporting OpenNotes
    We are funded entirely by non-commercial grants, philanthropy, and people like you.
  - Public Policy
    Government policies dictate how much access and control you have when it comes to medical records
  - Map
    Map of original open notes organizations
  - Contact
    Reach out to the OpenNotes Team.
- - OpenNotes Team
    Our team is made up of doctors, nurses, social scientists, health services researchers, and patient advocates.
  - Collaborators
    The OpenNotes Team works closely with patients, families, clinicians and researchers.
  - Advisory Board
    Our Board represent years of experience in patient care, technology, policy, and advocacy.

Cures Rule Help Desk. You have questions, we have answers.
Between now and the April 5 federal mandate of the implementation of the 21st Century Cures Act Info Blocking Rule, we’re answering your top questions about the open notes aspect of the rule.
TOP QUESTIONS
- - Do I need to change the way I document patient notes?
    - In several studies of how open notes affect the way doctors prepare notes, the majority report they don’t change the way they write their notes. But many clinicians experienced in sharing notes report their writing does change over time, feeling overall that it becomes more valuable, certainly to patients. Few report “dumbing down” their language, but they find themselves using fewer abbreviations and trying to avoid language that could appear judgmental to patients. Some report modulating their practice such that they become “teaching notes.”
      
      In general, patients do not expect doctors to write notes in layperson language, and more than 90% in one large study report understanding their notes well. Patients not bothered by terms they don’t understand, and they are happy to research terms. They feel reading notes helps them prepare more focused questions for clinicians. Overall, they express considerable enthusiasm for having a window into more information about their health.
      
      Resources:
      
      Klein J, Jackson S, Bell S, et. al. Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects. Am J Med. Doi: DOI
      
      Tip Sheet: Suggestions for implementing open notes in clinical practice, OpenNotes.org
      
      How to write an open note for patients, CT Lin, MD
      
      Watch: How to Write an Open Note webinar, January 29, 2021
      
      DesRoches CM, Leveille S, Bell SK, et al. The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients. JAMA Netw Open. 2020;3(3):e201753. doi:10.1001/jamanetworkopen.2020.1753
  - Am I allowed to hide specific visit notes with patients, and how do I do it?
    - Under the new federal mandate, in certain specified situations information can be blocked (or “hidden”) from patient access on online portals—these are called Exceptions. As examples, clinicians can block notes
      
      • If they believe a patient will harm another person or themselves as a result of reading a note
      
      • If they need to protect the security of another person’s electronic health information (e.g., a mother’s health information in a child’s record)
      
      Unless one of the Exceptions applies, clinical notes must not be blocked. Details about exceptions are outlined at HealthIT.gov.
      
      Learn more about how the Cures Rule applies to open notes.
  - Is there an OpenNotes “library”?
    - We’ve spent more than 10 years studying the effects of open visit notes on patients, care partners and clinicians. Time and again, studies show that open, transparent communication through visit notes are a good thing, across all demographics, and the majority of clinicians with experience with open notes feel it is a good idea and would recommend it to colleagues
      
      This website serves as the “library” of the OpenNotes movement. You are likely to find many answers to your questions if you take a little time, review a newsletter, or sign in to one of our past or future webinars. In addition, several places on this website detail research and best practices about open notes in special circumstances. Check them out.
      
      Pediatric toolkit
      
      Mental health toolkit
      
      Care partner toolkit
      
      OpenNotes Research search tool
  - How will open notes impact my workload?
    - In advance of open notes, clinical staff more often than not anticipate significant changes to workflow and workload. However, time after time we hear such worries proved misplaced. Among the >260 organizations that implemented open notes prior to November 2020, not one reported a significant increase in visit time with patients or in e-mail traffic. In fact, some reported a decrease in e-mail, as patients are able to resolve confusion or forgetfulness by reading their notes.
      
      Patients generally respect their provider’s time, and most doctors report little, if any, impact from patients on their daily practice. Indeed, once underway, many report forgetting they were participating in a new intervention. But in recent surveys, about one in three doctors report taking somewhat more time to write notes, with fewer than 10% reporting taking much more time. We do not have independent verification of such reports. However, more than a few tell us that initially they took more time, but once settled in with this new transparency, they prepare their notes with the same efficiency as in the past.
      
      Resources:
      
      OpenNotes FAQs for Healthcare Professionals
      
      Walker J, Leveille S, Bell S, et al. OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes. J Med Internet Res 2019;21(5):e13876. DOI: 10.2196/13876
      
      DesRoches CM, Leveille S, Bell SK, et al. The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients. JAMA Netw Open. 2020;3(3):e201753. doi:10.1001/jamanetworkopen.2020.1753
TOP BENEFITS FOR CLINICIANS AND PATIENTS
- - Mutual trust: a major benefit from transparency
    - In numerous studies across multiple specialties, the majority of patients (93-99%) reported that reviewing their notes made them feel the same or better about their doctor, and more than half of the doctors participating reported that sharing notes led to improved patient satisfaction and trust.
      
      Evidence is mounting: Sharing notes with patients can lead to better communication, more collaborative decision-making and stronger relationships. Perhaps most importantly, open notes can be powerful tools for enhancing patient engagement, and considerable research demonstrates that engaged patients have better outcomes.
      
      Learn how open notes adds to the therapeutic appliance, builds stronger relationships and improves patient engagement.
  - Improved and increased engagement with care partners
    - Open notes can assist and support family, friends, and others who are care partners and caregivers. Forty percent of patients who read notes report sharing them with others, primarily family members. Shared notes help care partners manage the health needs of the people in their care, including scheduling visits, reconciling medication lists, and following through on a host of recommendations.
      
      Importantly, transparent communication may be a powerful way to diminish stress and morbidity in the care partners themselves. In a recent study, care partners reported benefits from note sharing similar to those reported by patients. Additionally, care partner access to notes can serve as a bridge for patients with limited English, low health literacy, and those without computers or access to the Internet.
      
      Enhancing mechanisms that offer ready proxy access to portals for care partners is clearly an important national work-in-progress. OpenNotes is engaged in research focusing on best practices and enhancing processes that meet the needs both of the individual patients and those caring for them.
      
      During COVID
      Care partners are often under enormous stress, and the Covid-19 pandemic has magnified virtually all the contributing factors. Transparent communication can play a large role in diminishing burdens care partners themselves experience.
      
      View the Care partner toolkit to learn more.
  - Adherence to Medications and Care Plans
    - Improved adherence to medications may be the most important clinical benefit transparent communication can confer. In a study published in 2019, a majority of patients reported that open notes improved their understanding of why and how to take their medications, and one out of six patients surveyed reported that open notes led them to adhere to their regimen more closely. Given that poor adherence to medications may cost the health care system as much as $300 billion dollars annually, this finding has striking implications.
      
      In interviews and focus groups with patients and families, we have repeatedly heard anecdotes supporting these survey findings. Moreover, a study by the Geisinger Center for Health Research found that patients in practices offering access to notes were more likely to fill their prescriptions for blood pressure medication than were those in practices whose notes remained hidden.
      
      Resources:
      
      Patients Managing Medications and Reading Their Visit Notes: A Survey of OpenNotes Participants, Annals of Internal Medicine (2019)
      
      Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study, Journal of Medical Internet Research (2015)
OPEN NOTES IS EVEN BETTER WHEN…
- - You consider equity and disadvantaged populations
    - The digital divide persists. Individuals who do not usually speak English at home, have less than high school education, are nonwhite, older, or Hispanic are not as likely to register on patient portals and are therefore less likely to read their notes. However, in repeated studies, when these patients do get to read notes, they are those most likely to report benefits from note reading. Safety net institutions around the country, both hospitals and community-based health centers, have been joining the OpenNotes movement, and we receive many positive reports.
      
      Resources:
      
      Open Notes for Health Professionals
      
      Effects of Open Notes on Health Professionals
      
      OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes. J Med Internet Res 2019
  - You make it easier to find the notes
    - Navigating patient portals remains a challenge for patients. Patients often give up before finding what they need, and this includes finding notes. Health systems that make it easy for patients to access notes find that more patients choose to register for their portals and use open notes to full advantage.
      
      Resources:
      
      OpenNotes white paper: Implementing Open Notes: Improving patient access to notes on portals
      
      OpenNotes Grand Rounds recording: Improving Portals for a Better Patient Experience
  - You encourage patients to read their notes
    - In surveys of patients who read notes, many report viewing notes only after being encouraged by a clinician to do so. The argument is simple: Benefits that come from transparent communication between clinicians and patients—feeling more in control of care, adherence to medications, stronger relationships, better engagement—are amplified when patients read their notes.
  - You remind patients when notes become available (but not too often)
    - Most patients do not know that their notes are available for review. Indeed, more than a few don’t realize that clinicians write notes following visits.
      
      Patients benefit from messaging about notes and your portal through multiple platforms, including posters, handouts, social media, email, text messaging, and person to person communication by members of the health team. A study of two health organizations, one with an electronic reminder system, and one that stopped reminding patients half way during a 2-year period, showed that patients viewed their notes far more often when accompanied by an email notification.
      
      If you have an active Patient and Family Advisory Council (PFAC), we strongly recommend involving them in developing your communication materials about open notes.
      
      Resources:
      
      OpenNotes Communications Toolkit
      
      OpenNotes Patient-Family Advisory Council Toolkit
      
      OpenNotes Grand Rounds recording: Improving Portals for a Better Patient Experience
      
      Mafi J, Mejilla R, Feldman H, et al., Patients learning to read their doctors’ notes: the importance of reminders, JAMIA, February 2016, ocv167; DOI:10.1093/jamia/ocv167
WHERE WE NEED TO LEARN FAR MORE…
- - Inpatient and Emergency Department progress notes
    - We’ve spent over 10 years studying the effects of open visit notes on patients, care partners and clinicians in a broad variety of ambulatory care settings. Time and again, studies show that open, transparent communication through visit notes are a good thing, across all demographics, and clinicians think open notes are a good idea.
      
      Now, as a result of the Interoperability and Information Blocking Rule, all progress notes must be shared—including inpatient and emergency department notes. Since the focus of investigators has primarily been on office practice, we know little about the effects of sharing notes on inpatient services and in emergency rooms.
      
      But there is developing experience. Learn with us: Tune-in to this Webinar case study about Open Inpatient Notes at UC San Diego Health on March 23.
      
      Resource:
      
      Pell J, Manusco M, Limon S, et al., Patient Access to Electronic
      Health Records During Hospitalization, JAMA Intern Med. 2015;175(5):856-858
  - Timing the release of test results
    - We study the effects of open visit notes on patients, clinicians, and care partners. We have not addressed test results released to patients through online portals. But there is considerable experience nationally with this issue. Using portals, some systems have invited patients to review such results for more than 20 years. These practices are quite variable. Some release everything the minute results are available. Others have selective embargoes…a CT scan or MRI may be published 48 hours later; pathology reports may be “blocked” for 2 weeks, and so on.
      
      Now, with the Interoperability & Information Blocking Rule, we are hearing some consternation about the timing of the release of test results. Ideally, individual patients could specify their own processes. In our informal discussions with patients, some want immediate availability; others prefer to hear first from their clinicians, particularly if bad news could be on the horizon.
      
      We know of little empirical evidence quantifying such divergent views. Our sense is that “embargoes” are in flux, and some EHR vendors are also enabling clinicians to make case by case decisions to block or delay results, hopefully with the individual patient’s needs and desires firmly in mind. This may become an example of where the “letter of the law” specifies one thing, and evolving “common law” heads in a somewhat different direction.
      
      Ideally, patients should have a choice in the information they want to see, and when they want to see it. Overall, we are learning patients want to be in more control of their health information. This Information Blocking rule is an opportunity to invest in research and technologies that allow people to set their own information preferences. As portals and apps evolve in the future, offering patients more and more options will be part of a rapidly changing landscape of care.

News from OpenNotes

More Than 40 Million Patients Can Access Their Clinicians’ Visit Notes Via Secure Portals at 200 Health Systems

OpenNotes announced today that more than 40 million patients using secure online patient portals can now access the notes

Minding Wellness PODCAST: Empowerment through Transparency with Cait DesRoches and Liz Salmi

Cait DesRoches, DrPH, and Liz Salmi were interviewed by Claudia Cometa for the “Minding Wellness” podcast. In this episode Liz and Cait talk about the mission and research behind OpenNotes and what they would like to see happen in health care. Listen to the episode here.

Tagged With: Cait DesRoches, liz salmi, podcast

A Note From the Director: May 2019

Earlier this month, OpenNotes published exciting new research in the Journal of Medical Internet Research. We’ll tell you about the study which focused on patients at the same health systems as our pilot study did ten years ago, except this time note sharing was done across virtually all specialties. In other research news, doctors Charlotte…

OpenNotes Comments on HHS Rule to Improve Patient Access and Interoperability

In February 2019, the U.S. Department of Health and Human Services (HHS) proposed a new rule to support seamless and

Making Gains in Health Care Interoperability

Last month, the U.S. Department of Health and Human Services (HHS) released proposed rules to improve the interoperability of health information. Rules issued by the Office of the National…

OpenNotes Submits Comments on Modifying HIPAA Rules to Office of Civil Rights

OpenNotes submitted comments and recommendations to the U.S. Office for Civil Rights (OCR) to assist in modernizing Health Insurance Portability and Accountability Act (HIPAA) regulations.

Tagged With: HIPAA, Office of Civil Rights, ONC

Trend Report: Modernizing Access to Health Information

At OpenNotes, we keep our ears to the ground when it comes to the growing transparency movement in health care. Here are a few things that have peeked our interest recently regarding

OpenNotes Leaders to Present at SXSW Interactive

Austin here we come! OpenNotes hits the mainstream when Executive Director Catherine DesRoches, DrPH, and Senior Strategist Liz Salmi present at the 22nd Annual South by . . .

More than 30 Million Americans Have Access to their Clinical Notes

BOSTON — OpenNotes announced today that more than 30 million Americans now have access to notes written by their clinicians in fully transparent medical records. OpenNotes is a call to action committed to improving health care by . . .

Research roundup: Six OpenNotes papers you should be reading right now

As awareness about the OpenNotes movement spreads rapidly, clinicians and health system leaders around North America are looking for more information on how sharing notes motivates behavior and intersects with special patient populations.

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