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A Long Time Coming: Health Technology in the Hands of Patients

By Erin Mackay, National Partnership for Women & Families and Dena Mendelsohn, Consumers Union

Did you know that you may already be able to access your digital health records from home?

Harnessing the power of technology to improve health and care doesn’t have to be complicated; you don’t need the latest Fitbit, Apple Watch or GoogleGlass for technology to make an impact on your life. Every day, patients and families around the country use digital health data in less flashy but effective ways to help them manage their health or care for a loved one.

Consumers Union reached out to consumers, asking them about their experiences with accessing their health information online, generally through “patient portals.” Their stories illustrate the less flashy – but still exciting – everyday uses of health IT; little things that make a significant difference in people’s lives. For example, consumers used their online medical information to better understand doctor visits and treatment regimens, avoid gaps in prescriptions, schedule appointments, strengthen relationships with their providers and help with caregiving responsibilities. Consumers have also caught errors and omissions needing correction; in one case, a consumer discovered his medical record listed him as four inches shorter and thirty pounds heavier than he actually was!

There’s still a lot of work to do to ensure that electronic information and tools for securely using and sharing this data are available to all individuals across the country, and to help patients and families understand why and how to make the best use of this information.

For a variety of reasons, stories like the ones below are the exception rather than the rule. Based on their personal stories, people across America want to be better connected with their health information. And by asking for their health data digitally, consumers can help change health care practices and culture. Ask your healthcare provider how to access and download your health records (and check out the resources on the GetMyHealthData website!).

“I have every kind of allergy imaginable (I was born on the wrong planet)…[and] get frequent allergy shots, and when I’m away from home, I can log on and see when I last got a shot. And I know that my doctor charts everything online, so they have an accurate listing of the doses I’ve received, any reactions I’ve had, and other important information. Staying on top of my health care has become really easy now that I can do so many things online – this has revolutionized health care for me.”
-Hekate; for more on Hekate’s story, click here.

“I already have a really great relationship with my doctor (he’s less than half a mile away, and his assistant knows me by voice), but this tool has been helpful for things like making appointments. It’s easy to find information at 10pm at night, or even just right after they’ve closed the office. This is a long time coming, and it’s good that the technology is here.”
–Richard T.; for more on Richard’s story, click here.

“I’ve found that because I have access to my medical information, I know more about what goes on during doctor’s appointments. I’ve checked my record and found that doctors have diagnosed me with conditions without telling me they’d made a diagnosis… Overall, it’s made my life easier to have access to this information online. I feel that I and my doctors have a more well-rounded picture of me and my health.”
– Carolyn; for more on Carolyn’s story, click here.

All the information is there – all the doctors you’ve seen, all the appointments you’ve made, and what was talked about in each visit. I especially like being able to manage my prescriptions online…Because I have lupus, I get a lot of prescriptions …If you’re taking multiple prescriptions all the time – not just the occasional one for a cold – it’s really helpful. It reminds me when I can re-order, so it’s easy to avoid a gap in my prescriptions.”
-­R.G.; for more on R.G.’s story, click here.

The primary care physician who took care of my Chinese-speaking stepmother in the last years of her life always would respond to my email messages within a day. I was able to keep her updated on my stepmother’s condition, whether my stepmother was living at a board and care home, using an adult day health program, living at a skilled nursing facility, or admitted at a hospital.
– Ignatius B.; for more on Ignatius’s story, click here.

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