About Lupus

Lupus Coping Corner

Get Your Health Data: It Matters

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

Many of you may have noticed some big changes in your doctor’s office: more computers and tablets. Healthcare has been called the “last frontier” in technology. The hope is that when the potential of technology is fully realized and all healthcare providers are able to use it efficiently, we will all enjoy better coordinated, higher quality healthcare.

How can technology be used to help coordinate my care?

Technology can benefit patients like us with lupus especially, because our care requires collaboration of a multidisciplinary healthcare team, and it’s important that the whole care team has updated information. Here’s one of many examples: lab tests. How many times have you gotten stuck with a needle for bloodwork, only to have to do it again a couple of weeks later because your specialist didn’t get the results faxed in time for your appointment? Technology can help ensure our providers get these results in real time.

What does electronic health data mean to me?

Technology in healthcare means that our health records are moving from paper to highly secured, electronically based storage. This means your health data can be more easily accessed and useful rather than just sitting in a fat manila folder with the first three letters of your last name slapped on the tab in colored stickers. Imagine you and your doctor want to discuss reducing your medication, but you’re worried about disease activity. Technology can help quickly piece together your history of flare ups to see if it’s the right time to change your regimen.

Health data can also help you see if your management strategies, like exercise for instance, are working. This could be as simple as being able to look back at the results of a bone density test you took three years ago and comparing it to a recent test to see if your exercise and supplement regimen has helped with your bone loss, all without having to call your doctor or even worse, schedule another appointment.  

It is important to note that we have a long way to go towards seamless electronic access to and compilation of health information all in one place. Many doctors have been slow to adopt technology, and there are thousands of different systems out there that don’t “talk to one another” -- for instance imagine if you couldn’t call anyone on a different cell phone carrier? But I’ve already experienced the positive impact of health information technology in my lupus care, and for health information technology advocates like ePatient Dave and Regina Holiday, technology was life-saving. We’re heading in the right direction, and sometimes slow and steady progress is better than a race to the finish.

The great news is that our perspective is becoming increasingly important in the national conversation about health information technology and how it should be used to benefit the most important player: the patient. It’s time for us to start driving change.

Participate in the ‘GetMyHealthData’ campaign!

A lot of doctors and hospitals have taken advantage of a government incentive program called Meaningful Use to get help with using electronic health records. The program has many elements that are patient focused, one of which is a requirement to get a certain number of patients to electronically access their information through what’s called a “patient portal”. Doctors expressed much concern with this measure because it was the patient’s responsibility to do it and some didn’t believe patients even wanted electronic access to their health information. As a result, the program made this requirement easier to comply with by decreasing the number of patients that needed to participate. This change in the rules upset a lot of people, like patient advocacy groups, and it’s why the GetMyHealthData campaign was created.

Our goal as patients is to become empowered, active participants in our healthcare and access to our health data, whether stored on paper or electronically, is critical. Electronic access can make this easier and more efficient for doctors and patients. This campaign is the patient’s opportunity to tell policymakers, technology vendors, hospitals and doctors that we demand electronic access to our information now. A collection of patient voices is louder than one, so I encourage you to take part. You can:

  • Share your experience in requesting and receiving health information electronically, such as through a patient portal or a secure email
  • Sign the petition demanding secure, online access to your health information

Check out the website www.getmyhealthdata.org to learn more about the campaign. To learn more about health information technology visit http://www.healthit.gov/patients-families.

For more information about your right to access your information, check out the Office for Civil Rights’ website for great resources like videos, pamphlets and answers to common questions. Start here for the basics:

  • Click here for an information sheet about your health information privacy rights
  • Click here for a video about the right to access your records

Click here for a video about new rights that includes electronic access to your information.

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.