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

Patient Success Story: Suzanne Mintz, caretaker

When Suzanne Mintz co-founded the National Family Caregivers Association in 1993 (now called the Caregiver Action Network), she hoped to create a support structure for people whose lives, like hers, include providing care to a family member with a chronic illness or acute medical condition. At the time, she had provided support for her husband, Steven, for nearly 20 years after his diagnosis of multiple sclerosis. When they first learned the news, Steven was 31 and Suzanne was 28, and they had a 5-year-old daughter. Steven’s diagnosis changed the trajectory of their lives.

Today, after 43 years as the primary caregiver for her husband, Suzanne has a distinct perspective on how changes in patient and caregiver access to health IT have made life better for her and Steven — and for others like them.

For Suzanne, the most important change has been relatively simple: the increasing availability of patient portals that allow patients and their authorized caregivers to access health records, exchange information with clinicians, and take care of routine tasks like prescription refills.

“The portals help me ask questions and get answers quickly. They help me move things along with Steven’s care without the need to physically go to the doctor’s office. E-prescribing also means we don’t have to make an extra trip to the pharmacy.”

Even though portals have reduced the number of in-person visits to Steven’s doctor, Suzanne says they have increased her and Steven’s engagement with his care. “Having access to the information and the ability to send questions and get answers has helped build our relationships with the doctor. It creates a real dialogue. Portals make you feel like you are a member of your own care team, or in my case, like I’m a part of Steven’s care team.”

The impact of portals on Steven’s health isn’t limited to everyday care. Suzanne and Steven use their portals to deal with potential crises as well. When Steven went through a bout of pressure sores, Suzanne used a portal to escalate the issue and get help from a home health care agency to bring the issue under control quickly, without a difficult office visit. But even with the successful outcome, Suzanne sees room for improvement. “This portal didn’t give me the ability to send a picture. The doctor gave me an email address, but I would have liked it if I could have uploaded an image to the portal directly.”

Still, compared to her interactions with physicians who don’t have portals, Suzanne has no major complaints. “Without a portal, it’s hard to get responses from doctors when it isn’t a crisis. You have to give information over the phone, usually indirectly, and it’s not as effective as written communication. Also, with portals, sometimes you can answer your own question by looking at health records online, or ask better questions about potential issues like drug interactions.”

Although patient portals first started appearing several years ago, Suzanne knows that not all practices have embraced them yet — and that some patients and caregivers have anxiety about using them.

“Don’t be afraid of them!” Suzanne urges patients and caregivers. “Don’t be concerned about putting your information into them, because they are secure. Test it out by doing something simple, like scheduling an appointment or requesting a prescription renewal. Ask a simple question and see how quickly you will get a response. If your doctor doesn’t have a portal, or you don’t know if they have one, ask them about it. Ask them when they will have a portal for you to use.”

As a caregiver for 43 years, and caregiver advocate for almost as long, Suzanne sees great advantages to using these systems. “They make your life easier,” she explains. “As a caregiver, you’re not always able to call the doctor’s office on their schedule. With the portal, you can do what you need to do on your schedule, anytime day or night.”

Although Suzanne retired from Caregiver Action Network in 2013, she’s still a caregiver, and still a caregiver advocate. “Anything you can do to save time, to make your life easier as a caregiver, is a positive. And what’s better for you is better for the person you care for, too.”

Asked how things can improve in the future, Suzanne offers this: “The medical and policy communities really need to work with families to understand the patient and caregiver perspectives. New technology is wonderful, but it isn’t enough. If you really understand people’s needs and how to communicate with them, you can improve the real lives of people living this every day. Putting patients and families’ needs first has to be more than a slogan.”