On November 2, 2020, new federal regulations will require providers and health systems to share clinical notes and results with patients via patient portal without delay.
ABOUT
Patients have had the right to request and view their entire medical record since 1970. The 21st Century Cures Act, passed in 2016, added additional requirements for sharing electronic health information with patients. These requirements were finalized in the ONC Final Rule published on May 1 of this year.
The requirements are intended to make clinical information more readily available to patients, removing barriers and delays related to traditional medical record request processes. As such, the requirements do not allow for routine time based delays for release of electronic health information. WVU Medicine providers have had the option to share progress notes with patients through MyWVUChart since 2018, although most notes have not been voluntarily shared. WVU Medicine has shared most diagnostic results via MyWVUChart for years; some with no delay and others after an intentional delay.
To comply with the regulations and support the principle that the medical record belongs to the patient, WVU Medicine will be making changes to automatically release clinical notes and results to MyWVUChart without delay. Table 1 on the next page outlines current and planned timeframes for release of information effective November 2, 2020.
These changes will apply to most clinical information. It is important to note that based on the regulations, a provider can choose to hold back a specific note or problem if certain exception criteria are met (i.e. risk of physical harm or privacy concern). Results and medications cannot be manually withheld from MyWVUChart at this time. Over the coming years, the list of information that must be shared electronically without delay will continue to grow.
While the technical changes required to comply with these regulations are rather straightforward, adjustments to clinical practice and related workflows will take some adjustment. Some patients will welcome the increased access to information and become more engaged in their care. Others may have more questions and concerns. Provider and care team messaging regarding the purpose of clinical documentation will become more important. Proactive management of patient expectations for communication regarding significant results will be key to a smooth and successful transition.
The information on the following pages address concerns and questions related to this enhanced access to information.
RELEASE SETTINGS FOR RECORDS AND RESULTS
BEST PRACTICES
Notes
- Tell the patient they will see their note(s) in MyWVUChart.
- Acknowledge that it is common for providers to use medical terminology which may be unfamiliar to patients.
- Stick to facts, observations, clinical impression, and plan of care.
- Avoid pejorative and inflammatory statements.
- Write as though a patient, family member, or lawyer may read the note.
Results
- Tell the patient what you are looking for and what you may expect to find when ordering a test.
- Tell the patient that they may see their results before you do.
- Ask the patient to give you at least 2 business days to review.
- Tell the patient that you or your staff will contact them when urgent or emergent action is necessary.
- Tell the patient that not all “abnormal” results are significant.
POTENTIAL ADAPTATIONS TO WORKFLOW/PRACTICE
General Lab Results
Create a document to explain your practice’s approach to handling common results.
- We believe in information transparency and we believe you deserve to see your information as soon as it is available.
- We release ALL notes and results immediately to you. Therefore, you may see some results even before we do. Please give us 2 business days to review and let you know our thoughts.
- We look at every result. We will contact you with any results that concern us.
- There are many results like “MCHC” and “MCV” that may show abnormal but are not clinically important. There are other results, like “ANA” that are really challenging to interpret and require reviewing other results and other information from your chart. Sometimes these are best discussed in person.
- Knowing this, if you still have an immediate concern, you can send us a message or call our clinic to
discuss.
When possible, order tests to be completed a few days prior to the clinic appointment, so that results
can be reviewed during the appointment.
Advanced Imaging (CT, MRI, PET)
Create a document or patient instructions to be given to the patient at the time of order entry.
- CT, MRI, and PET reports can show new or recurring cancer.
- These reports can contain words that are difficult to understand.
- These reports can show unexpected results.
- We always plan to review these results with you and decide on a plan together. We prefer to do this either in person, but video visit, or by phone.
- When possible, we will discuss the possible results with you BEFORE getting the test, and the next steps we would take with each result.
- Some patients prefer to see their results online immediately. Because of possible “bad news,” other patients may feel more comfortable waiting to discuss results when their provider is available. As the patient, you can choose when to view your result.
- If you have a concern that cannot wait, you can send us a message or call our clinic to discuss. Calling the clinic after hours, you can reach the operator, who can get you in touch with the on call provider for your clinic. It is of course better if you can wait to discuss this with the provider who ordered the test, who would know you and your health history the best.
Pathology Results
Develop anticipatory guidance handouts to give at the time of the procedure.
Example: Understanding Your Pap Smear Result
Normal: A normal (or “negative) result means that no cell changes were found on your cervix. This is good news, but you may still need to get Pap tests in the future. New cell changes can still form on your cervix. Your doctor may tell you that you can wait 3 years for your next screening test is you received a Pap test only. If you also received an HPV test and the result is negative, your doctor may tell you that
you can wait 5 years for your next screening test.
Unclear (ASC-US): It is common for test results to come back unclear. Your doctor may use other words like equivocal, inconclusive, or ASC-US. These all mean that your cells could be abnormal. They could be related to like changes such as pregnancy, menopause, or an infection. The HPV test can help find out if your cell changes are related to HPV. Ask your doctor what to do next.
Abnormal: An abnormal result means that cell changes were found on your cervix. This usually does not mean cancer. Abnormal changes on your cervix are likely caused by HPV. The changes may be minor (low-grade) or serious (high-grade). Most of the time, minor changes go back to normal on their own. More serious changes like “pre-cancer” can turn into cancer if they are not removed. In rare cases, this test can show that you may have cancer. You will need other tests to be sure. The earlier you find cervical cancer, the easier it is to treat.
“HPV Test Result: An HPV test result can be positive or negative.
Negative: A negative HPV test means you do not have an HPV type that is linked to cervical cancer. Your doctor may recommend 5 years for next screening test.
Positive: A positive HPV test means you do have an HPV type that may be linked to cervical cancer. This does not mean you have cervical cancer now, but it could be a warning. The specific HPV type may help to determine the next step.”
Adolescent notes, results
- WVU Medicine supports the privacy of the teen as protected by the state.
- WVU Medicine will share clinical information with the adolescent account, some of which may be sensitive.
- Per WVU Medicine policy, adolescents (age 10 and older) have the right to request or remove proxy access for a parent or guardian.
- No proxy access will be granted without consent from the adolescent.
Foster Care
- Foster parents for children who are in the custody of the state cannot get MyWVUChart or Proxy access.
- Foster parents who have legal guardianship for the child can request MyWVUChart or Proxy access per the general rules for children and adolescents.
- Requests must be made to the Health Information Department with supporting documentation.
Sensitive Health Information and Proxy Access
- Providers have a responsibility to protect confidentiality of sensitive information for ANY patient under their care.
- Providers can ask a patient if they have a proxy for MyWVUChart who they may or may not want to see sensitive information.
- Providers can see if a patient has a proxy assigned within Epic.
- Providers can remove proxy access to MyWVUChart at any time to protect the confidentiality of patient information.
- Providers can remove MyWVUChart access at any time to protect the confidentiality of patient information.
- Patients have a responsibility to determine who can and cannot see sensitive information from their medical record.
- On November 2, ALL proxy access will be updated.
- There will be 2 types of proxy access:
- LIMITED proxy access will include:
- Scheduling, video visits, bill pay, messaging
- FULL Proxy Access will include:
- Scheduling, video visits, bill pay, messaging
- Clinical information: notes, results, medications, problems, after visit summaries, etc.
- LIMITED proxy access will include:
- Proxies for patients under 10 years will have FULL proxy access.
- Proxies for patients 10 years and older will be given LIMITED proxy access.
- Patients 10 and older will have the ability to request and consent for FULL proxy access for anyone they feel should have access to all clinical information accessible via MyWVUChart.
Proxy access for patients with diminished capacity for decision making
- Parents, guardians, or those with medical power of attorney may request FULL proxy access in cases where the patient has diminished decision making capacity.
- Requests must be made to the Health Information Department with supporting documentation.
Previous Notes and Results
- Historical notes and results posting to the record prior to November 2, 2020 will not be immediately available via MyWVUChart.
- However, a patient can request those electronically at any time through Health Information Management.
Exceptions based on state protections
- Notes generated in any behavioral health department will not be shared automatically, but those providers can share as needed.
- Notes generated in adolescent medicine clinic will not be shared automatically, but providers can share them as desired. Please note that adolescents are seen in many clinical environments and it is not possible to restrict note sharing based solely on the age of a patient.
- Patients with substance abuse disorder who request that their information not be shared will be advised by Health Information Management to remove proxy access from MyWVUChart.
EXAMPLES/EXPERIENCE FROM ANOTHER LARGE HEALTH SYSTEM
Shared with permission from UC Health in Colorado. UC Health has shared notes and results more freely with patients
Results
Patient Feedback
OB/GYN – Fetal Demise
Tumor Board
Pathology results were previously delayed 14 days because multi-disciplinary conferences often met every 10-14 days, and the team wished to provide the result AND the treatment plan simultaneously. As a result, many patients obtained their results NOT via MyChart but through medical records, or called the clinic requesting the result. We will need to routinely counsel patients ahead of time, what results are possible, what to expect next.
Some patients tell us that seeing bad news online is difficult. When they hear bad news in person or by phone, none of the rest of the conversation is remembered later. If they see the result first, they have time to process. The follow-up conversation with the provider is much more thoughtful, less stressful and better remembered.
Reduction of phone calls for results
Clinics found prior to release of results electronically that 30% of phone volumes were patients calling for test results. The automatic sharing of results has resulted in LESS phone calls.
Prevention of missed diagnoses
There have been cases of “failure to diagnose” where a lab or biopsy result was missed by the clinic process and patient was lost to follow-up until a full blown cancer was found years later. We believe having patients viewing their result reduces this risk.
RESEARCH AND OTHER RESOURCES
Studies completed at sites who have shared information more freely have shown potential impact on patient trust in their provider, patient engagement, shared decision making, and utilization of services.
- https://pubmed.ncbi.nlm.nih.gov/27193032/
- https://pubmed.ncbi.nlm.nih.gov/29982659/
- https://pubmed.ncbi.nlm.nih.gov/31066717/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371328/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4705365/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885801/
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4919031/
www.opennotes.org is a great website for patients and providers.
Other useful sites and links to articles: