OpenNotes

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Summary

OpenNotes is a national initiative that allows or rather encourages patients access to access their Personal Health Record. [1] Open Notes gives patients’ access to the appointment (visit) notes written by their doctors, nurses or other clinicians. Up until now clinician notes have remained largely hidden from patients. [2] Open Notes fueled by the Robert Wood Johnson Foundation and 2 hospitals and Geisinger Health System took park in allowing 20,000 patients access to their primary care doctors notes.


Introduction

OpenNotes, according to the website, “is the international movement dedicated to making health care more open and transparent by urging doctors, nurses, therapists, and others to share their visit notes with patients.”[3] Although under the federal law known as the Health Insurance Portability and Accountability Act of 1996 (HIPAA), patients already reserve the right to access their medical records, receive copies, and request amendments; however, the process can be fraught with red tape with superimposed state and organization-specific policies, which ofttimes make this a complex procedure that sometimes includes processing fees.[4] Since the OpenNotes movement began in 2010, making notes more readily (often immediately) accessible to patients has been shown to improve transparency, patient involvement, and certain health outcomes.[3] In the USA, it is currently estimated that greater than 18 million patients are now able to access their notes, usually through online patient portals/personal health record (PHR) systems.[3]


Background

The concept behind opening notes has been largely linked back to 1973 in the article “Giving Every Patient His Medical Record: A Proposal to Improve the System,” which was published in the New England Journal of Medicine. The article proposed that certain problems can be alleviated if patient had access to their medical records, such as “maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.”[3]


Fueled by advancing technology, the idea of using electronic health records (EHRs) to improve patient healthcare and safety outcomes was touted in 1991 by the Institute of Medicine (IOM) report, “The Computer-Based Patient Record: An Essential Technology for Health Care.”[5]


In 1996 HIPAA was enacted, and within this law, The Privacy Rule gave patients the right to inspect, review, and receive a copies of medical and billing records, thus removing many of the longstanding barriers to access and making this a ubiquitous patient right.[6]


Although the emergence of patient portals can be linked back to the late 1990s, a principal driver in the development was led by features mandated by meaningful use (MU) criteria established in 2009 by the Centers for Medicare and Medicaid Services (CMS) EHR incentive program.[7]


The OpenNotes movement officially begins in 2010 with the launch of an exploratory study involving opening notes from 105 primary care providers among 13,564 patients, which was led by Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center.[8]


The study results were published in 2012, concluding that the patients accessed their notes frequently and the majority reported relevant benefits, minimal concerns, and a desire for this practice to continue. Furthermore, the providers reported no significant concerns or effect on their work lives.[9]


In 2013, the Veteran’s Association (VA) joins the OpenNotes movement after releasing a Blue Button update, which provided access to additional information from the VA EHR.[10]


In 2014, various major healthcare organizations in the NW United States also began supporting the opening of notes, including Oregon Health and Science University, Kaiser Permanente Northwest, Legacy Health, The Portland Clinic, Salem Health, OCHIN, Providence Health System, Peacehealth Medical Group, and Samaritan Health Services.[3]


By 2017, greater than 18 million patients are now able to access their notes among 50 states in the USA, along with support across 5 continents and 11 countries.[3]


Outcomes

With health care and technology merging more every day evidence shows the benefits of having patients more involved with their care and health care team is improving outcomes.

Opening up visit notes is showing to:

  • Improve communication
  • make care more efficient
  • may help patients become more actively involved with their health and health care
  • build better relationships with provider and patient

Open Notes read by patient’s shows:

  • patients better remember what is discussed during the visit
  • Feel more in control of their care
  • Are more likely to take medication as prescribed
  • increase continuity with care plans


Other Potential Advantages

  • Improve health record accuracy, quality, and patient safety
  • Improve adherence to medication and treatment plans
  • Improve patient education and chronic disease management
  • Improve patient communication, satisfaction, and trust
  • Improve patient engagement and collaborative decision making
  • Improve support for caregivers
  • Improve efficiency and patient preparedness for visits


Other Potential Disadvantages

  • Patient will use records to self-diagnose and self-treat
  • Increase provider liability and malpractice suits
  • Increase patient contact time and questions between visits
  • Take provider more time to write notes
  • Eliminate candor in notes and impair ability to document sensitive topics
  • Increase patient request for changes in notes
  • Increase patient directive behavior
  • Decrease security of patient information


Logistical Aspects

Open Notes does come with options for clinicians. The clinician always has the option to use a "HIDE NOTE" option. Not all visits will be made available for patients to read notes. Examples of visits could vary by institution: mental health, addiction medicine, occupational medicine, pain clinic, employee health and adolescents between 13 and 17.

Open Notes may not be available for inpatient stays, nurse visits or Emergency Department visits.

If a patient disagrees with a note patients may request corrections or changes usually through a release of medical information services department.


Participating Organizations

According to OpenNotes, the following are organizations in the US that are participating in the movement:[11]

  • Adventist Health
  • Agnesian HealthCare
  • Allina Health
  • Augusta University Health
  • Avera
  • Banner Health
  • Baylor College of Medicine
  • Beth Israel Deaconess Medical Center
  • Billings Clinic
  • Boston Children’s Hospital
  • Cambridge Health Alliance (CHA)
  • Carolinas HealthCare System
  • CaroMont Health
  • CentraCare Health
  • Citizens Memorial
  • Cleveland Clinic
  • Columbia St. Marys
  • CoxHealth
  • Dartmouth-Hitchcock
  • Duke Health
  • Eskenazi Health
  • Essentia Health
  • Fort HealthCare
  • Geisinger Health System
  • Great River Health System
  • Intermountain Healthcare
  • Kaiser Permanente (Colorado)
  • Kaiser Permanente (Georgia)
  • Kaiser Permanente (Northwest)
  • Kaiser Permanente (Washington)
  • Kansas Health information Network
  • Lancaster General Hospital
  • Legacy Health
  • Licking Memorial Hospital
  • Mankato Clinic
  • Mayo Clinic
  • MD Anderson Cancer Center
  • Mercy Health
  • Mercy Medical Center
  • Michigan Medicine (University of Michigan)
  • Mosaic Life Care
  • Mount Sinai Health System
  • MU Health Care (University of Missouri)
  • Murfreesboro Medical Center
  • Nationwide Children’s Hospital
  • Nemours Children’s Health System
  • Ochsner Health System
  • Omaha Children’s Hospital & Medical Center
  • Ontario Shores Center for Mental Health Sciences
  • Oregon Science & Health University
  • PeaceHealth
  • PennState Health
  • Providence Health & Services
  • Rush University Medical Center
  • Saint Alphonsus
  • Samaritan Health Services
  • Sanford Health
  • Spectrum Health
  • Springfield Clinic
  • Stanford Health Care
  • Sutter Health / Sutter Medical Foundation
  • The Portland Clinic
  • The Vancouver Clinic
  • U.S. Department of Veterans Affairs (VA)
  • UCHealth
  • UHIN (Health Information Exchange in Utah)
  • UK Healthcare
  • University Health Network (UHN)
  • University of Florida Health
  • University of Iowa Health Care
  • University of Mississippi Medical Center (UMMC)
  • University of New Mexico (UNM) Health System
  • University of Utah Health Care
  • University of Vermont Medical Center
  • UW Medicine
  • VCU Health
  • Virginia Mason
  • Wake Forest Baptist Health
  • WellSpan Health
  • WellStar
  • Yale Health
  • Yale New Haven Health System


References

  1. Open Notes http://www.myopennotes.org/
  2. The Road Toward Fully Transparent Medical Records. Jan Walker, RN, MBA, Jonathan D. Darer, MD.,MPH., Joann G. Elmore, MD., MPH., and Tom Delbanco, MD. N Engl J Med 2014; 370:6-8 http://www.ncbi.nlm.nih.gov/pubmed/24304001
  3. 3.0 3.1 3.2 3.3 3.4 3.5 OpenNotes. (n.d.). Our History: Fifty Years In the Making. [online] Available at: https://www.opennotes.org/about/history/ [Accessed 22 Oct. 2017].
  4. Dimick, C. and Butler, M. (2017). How to Request Your Medical Records. [online] Journal of AHIMA. Available at: http://journal.ahima.org/2012/03/01/how-to-request-your-medical-records/ [Accessed 22 Oct. 2017].
  5. Brush LC. The Computer-Based Patient Record: An Essential Technology for Health Care. Journal of Clinical Engineering. 1992 Sep 1;17(5):380.
  6. AHIMA. (2013). Patient Access and Amendment to Health Records (2013 update). [online] Available at: http://bok.ahima.org/doc?oid=107003#.We0KnRNSzBJ [Accessed 22 Oct. 2017].
  7. Wright A, Feblowitz J, Samal L, McCoy AB, Sittig DF. The Medicare Electronic Health Record Incentive Program: provider performance on core and menu measures. Health services research. 2014 Feb 1;49(1pt2):325-46.
  8. Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, Feldman HJ, Mejilla R, Ngo L, Ralston JD, Ross SE. Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look AheadInviting Patients to Read Their Doctors' Notes. Annals of internal medicine. 2012 Oct 2;157(7):461-70.
  9. Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, Feldman HJ, Mejilla R, Ngo L, Ralston JD, Ross SE. Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look AheadInviting Patients to Read Their Doctors' Notes. Annals of internal medicine. 2012 Oct 2;157(7):461-70.
  10. VA. (2013). VA Introduces New and Enhanced Features for VA Blue Button. [online] Available at: https://www.va.gov/opa/pressrel/pressrelease.cfm?id=2422 [Accessed 22 Oct. 2017].
  11. OpenNotes. (n.d.). See Who’s Already Sharing Notes! [online] Available at: https://www.opennotes.org/join/map/ [Accessed 22 Oct. 2017].

Submitted (edited) by (James Becton)