The Office of the National Coordinator for Health Information Technology Patient Engagement Playbook
The Office of the National Coordinator for Health Information Technology Patient Engagement Playbook

Chapter 3

Ensure all patients can access and understand information

In this chapter

Learn how to:

Patient portals can be a powerful force in patient engagement — but it’s important for them to be inclusive and accessible. In 2017, nearly 1 in 5 individuals who were offered access to their online medical record but didn’t view it said they didn’t have a way to access the website.51

Depending on your patient population, trouble accessing or using the patient portal can contribute to health disparities — preventable differences in health outcomes between groups of people that are closely linked with social, economic, or environmental disadvantages. For example, if a portal’s medication refill reminders are only available in English, patients with limited English proficiency may be less likely to get the medications they need to manage chronic conditions.

When setting up your portal, take steps to ensure that it meets the needs of all your patients.

To support all patients in accessing their health information, you can:

  • Offer your patient portal in multiple languages
  • Make sure your portal is mobile-friendly, and that the pages load quickly, so that users with limited data or slow connections can still access it
  • Check that your portal is easy to navigate for patients who use screen readers or other assistive technology

You can also include information that helps your staff provide culturally and linguistically appropriate care — for example, data fields indicating patients’ gender pronouns and whether they prefer to be addressed by first or last name.

Make your patient portal accessible to caregivers, too.

For patients who are unable to access or use their portal (due to factors like limited cognitive function, lack of education, or inexperience with technology), family members or friends are essential members of the care team.52

Take steps to allow portal access for caregivers while accounting for the diverse roles caregivers can play and patients’ varied needs and desires.

The NewYork-Presbyterian Portal Help Desk | From the field

NewYork-Presbyterian (NYP), a health care delivery system in New York City, has implemented a support service to help patients overcome common challenges to using their patient portal. After launching the MyNYP patient portal in 2009, NYP looked for ways to help patients make the most of it. In 2012, the organization launched a portal Help Desk [PDF - 414 KB] to provide added support for portal users.

Four full-time staff who speak English, Spanish, and Chinese run the Help Desk, fielding 120 to 160 requests each week. They solve technological issues and also help patients who struggle with finding information on the portal. They are able to track and respond to requests online, and they can address common errors in a patient’s information.

To ensure the Help Desk’s efficiency, NYP established clear standards for responding to requests. Staff members typically respond to patients’ online requests in 1 to 2 business days — and they make every effort to resolve the issue at first contact by working with other hospital departments and facilities as needed, rather than referring patients elsewhere. For example, if a patient is looking for information that typically isn’t available on the portal (like certain sensitive health information), the Help Desk works with the Medical Records department to upload that data to the patient’s record free of charge.

After NYP updated some features of their portal, the Help Desk saw the complexity of requests increase while the total number of requests went down. This indicates that NYP has increased patient engagement by offering additional, comprehensive portal services.

For adolescent patients (ages 12 to 17), setting up varied levels of access can be particularly tricky. Adolescents may want to keep their health care decisions and medical information private, but laws vary from state to state.

Some state laws allow minors to receive specific kinds of health care, like mental or sexual health services, without their parents knowing or consenting. Others say that minors can make decisions on their own if they have an “adult status,” like being married or in the military.53

Parents may also want to keep certain information, like a family history of disease, between only themselves and their adolescent’s provider.

Boston Children’s Hospital54 | From the field

Boston Children’s Hospital (BCH) advocates for patient portals with flexible access that providers can tailor to meet patients’ and parents’ needs and to comply with relevant federal and state law.

Specifically, BCH recommends a portal that gives adolescents and parents access to different types of information. Following this model:

  • Adolescents can see nearly all of their medical information, including anything sensitive — like a birth control pill prescription or chlamydia test results. They can’t see any information that their parents have asked to keep private.
  • Parents can see information they’ve shared with their adolescent’s provider and general information about their adolescent’s health.

Adolescent MyChart55 | From the field

The University of California at San Francisco (UCSF) has customized MyChart — the patient portal offered through their EHR vendor, Epic — to offer appropriate patient and representative access that meets Meaningful Use requirements. The result is Adolescent MyChart.

Adolescent MyChart gives each audience access to distinct portal information.

Content Parent Proxy
0-11 years		 Parent Proxy
12-17 years		 Adolescent
12-17 years
Labs YES SELECTED SELECTED
Immunizations YES YES YES
Allergies YES YES YES
Growth Chart YES YES YES
Messaging to and from provider * YES YES YES
Appointment Request YES YES YES
Appointment View YES NO YES
Problem List/Summary YES NO YES
Medications/refill request YES NO YES
* Parent and teen can send private messages to the provider.

At UCSF, parents have limited portal access to potentially sensitive information about their teen children. This lines up with California law, which allows teens between ages 12 and 17 years to keep care for medical needs like sexually transmitted disease testing, contraception, and pregnancy care private. For example, parents can’t access lab results from a pregnancy test or OB ultrasound.

Through Adolescent MyChart, UCSF can more successfully engage teens in their care while also protecting their privacy.

“We made the decision to give teens their own access, and to make them able to see their full record, because we think it’s the right thing to do and it’s where we see patient-centered health information technology going.”

— Dr. Carolyn Jasik, Assistant Professor of Pediatrics, UCSF

As you’re developing and improving your patient portal, it’s important to be inclusive and accessible to non-English-speaking patients as much as possible.

Options for supporting non-English-speaking individuals in your patient population include:56

  • Use the portal landing page to make materials available in languages spoken by your patients
  • Enable your system to send text messages to patients in languages spoken by your patients, either as part of the portal or as a stand-alone functionality
  • Let patients know they may send secure messages to their provider in their native language — if you have workflows developed to translate and respond to these messages

Charles B. Wang Community Health Center (CBWCHC) | From the field

Since December 2013, the CBWCHC Chinese language patient portal (CLPP) has provided services in Traditional and Simplified Chinese in addition to the Center’s original English platform.

Charles B. Wang Community Health Center patient portal screenshot

Before launching the CLPP, an interdisciplinary project team collaborated to develop and review the portal, ensuring that it was easily accessible, culturally sensitive, and supportive of positive health outcomes.

“Promoting patient engagement through tools such as linguistically-appropriate patient portals is a key step for maintaining the importance of individual patient needs in receiving care services.”

— Lynn Sherman, MBA, Chief Financial Officer at the Charles B. Wang Community Health Center

Chapter 3 Recap

Look for opportunities to make your patient portal accessible and secure for all users.

  • Take steps to ensure your portal is accessible for all patients
  • Address adolescent health and privacy concerns in the context of relevant state laws
  • Create materials to support non-English-speaking patients

Content last updated on: April 17, 2019