In a perfect world, your health information would start following you from the moment you’re born. Every documented detail — vital signs, doctor visits, medical test results, diagnoses, prescriptions and hospital stays — would trail you like a magnificent magnetic cape, a vast health history attached to you and accessible in one convenient spot.
Unfortunately, the world has yet to develop a system capable of tracking the volumes of health data you generate. You’re left to gather it on your own from each provider, stitching together a patchwork of medical minutiae and milestones stretching across the decades.
“It can become overwhelming, and for some it’s seen as an additional burden of disease or care,” says Kelly Batista, executive director of the Brian D. Jellison Cancer Institute at Sarasota Memorial Health Care System in Florida.
How do you tackle the challenge? It boils down to four methods.
Use Patient Portals
“Those portals include information about your medical history, test results and interactions with the provider. They also allow you to communicate with providers, ask questions and schedule appointments,” Batista says.
Portals also enable you to:
— View notes your doctor has written during or after your visit.
— Download copies of your medical records.
— See which medications your provider has prescribed and request refills.
— Make payments to your provider.
— Update your insurance information.
— Take part in telehealth visits (depending on the provider).
On some portals, you can even add your own health observations. “It’s a private space for consumers to document information that isn’t accessible to the care team. For example, you can say what your mood is or add information you obtained from your fitness tracker. It’s a repository where you can keep all of that information in one location,” says Rema Padman, a health care informatics, analytics and operations researcher and Trustees Professor of Management Science and Healthcare Informatics at Carnegie Mellon University.
Use Mobile Health Apps
You can also keep track of your health information with mobile health apps — applications or programs that you download to a smartphone. “There are more than 300,000 health-related apps to track walking, sleep, fitness, diet, chronic disease like diabetes and much more. These apps become useful not only to track health conditions, but also to manage day-to-day events,” Padman says. “We’re also seeing apps and wearables provided by health care providers to monitor patients at high risk for adverse events, so they can intervene early and prevent emergency visits or hospital admissions.”
Many apps enable you to access your entire patient portal, including the same information you’d find on the website version and the same ability to communicate with your medical team, schedule appointments and update information. That can be handy if you’re on the go or you’re at a doctor appointment and need to share information with a provider who doesn’t have access to it.
You may also be able to download your patient portal information to other mobile health apps, such as those that help you manage pregnancy or chronic disease. That puts even more information in one easily accessible place.
Keep Hard Copies
The old-fashioned way to track health information is with hard (paper) copies of your medical records. You’ll need to request them and then pick them up in a provider’s office or have them sent by U.S. mail.
Once you obtain paper records, it helps to keep them organized in folders, boxes or three-ring binders. “For example, a three-ring binder with tabs can easily organize a patient’s medical information in categories such as allergies, medications, diagnostic scans, and lab work. Assembling their own binder allows for patients to easily reorganize and add information as needed. A helpful addition to binders is adding a calendar, which allows patients to keep track of their upcoming appointments and events,” says Alexis Eastes, a patient navigator based in Venice, Florida.
Like health apps, you can bring hard copies of your records to doctor visits for your own reference or a doctor’s review.
Keep Soft Copies at Home
Another way to track health information is by obtaining soft copies — files that exist only on a computer screen.
These files can include copies of medical records that are provided to you by:
— USB drive.
— A CD (an older format still commonly used in medical offices, especially for imaging tests).
Note that health care providers are required by law to deliver records in an electronic format whenever the provider has the ability to produce that type of copy (not just if it’s company policy).
You can also create your own soft copies of medical records by scanning paper records into a digital format. Once they’re scanned, name the files and organize them on your hard drive.
Still another type of soft record is a spreadsheet. Create one on your computer to help you track doctor or hospital visits (include the dates), medications, diagnoses and tests (include the results).
All soft medical records can be loaded onto a USB drive and taken to a doctor appointment for review.
Downsides to Consider
Tracking your health information can have downsides — some minor and some major.
For patient portals and mobile health apps:
— They aren’t accessible to everyone. You’re out of luck if you’re not tech-savvy or you don’t have internet access via computer or smartphone.
— They may charge fees. Some health apps charge annual or monthly subscription fees.
— They aren’t all linked. Unless all of your providers are in one large health care system, it’s unlikely they’ll be able to see information in all of your different portals and apps. “These are piecemeal solutions,” Padman says. “What you do with an app is captured there, but it’s probably not the information that your health care provider or pharmacy has.”
— They may be vulnerable to hackers. “If there’s a data breach, what are the policies to address those consequences? Would you be alerted?” Padman asks.
— They may own your information. Companies spend billions of dollars every year analyzing consumer health data, and it’s unclear which organizations do it and who cashes in on your information. “It’s a murky area,” Padman says. “What will they do with your information? Will it be distributed or sold to marketing organizations?”
— They require a little homework before use. Make sure any health app or patient portal you use is subject to federal privacy rules (it’s more likely among apps and portals from large health organizations and physician offices); proves that it can securely store your data; and states clearly that it won’t use, sell or share information without your permission.
For hard or soft copies of your medical records:
— Collecting them takes a lot of work. “We recommend that patients get a printout of their visit notes, their lab results or any other diagnostic testing before they leave the office. At least that gives them a running start,” says Betty Long, president and CEO of a nurse advocate group in Flourtown, PA.
— You may be charged for copies. Fees are allowed to cover only the cost of supplies, labor and postage.
— You may have to wait for copies. A provider has 30 days to comply with a records request, and in some cases that can be extended to 60 days.
And any type of medical record (even electronic records) can get lost or develop errors if information is entered incorrectly. Stay on top of it by regularly checking and updating your records.
It’s not enough to have medical records stored where you can find them; you must understand what they mean. “It’s a lot of information,” Batista says. “That’s where you have the option through portals to communicate with your provider, ask questions and get feedback. Also, in our program, patient navigators step in with education.”
No matter which method you use to track your information, experts agree that it’s worth the effort. “Everyone has a different way of consuming the data. What’s important is that you find a way that works best for you,” Batista notes. “It’s empowering you as a patient.”
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Keeping Track of Health Information: What You Should Know originally appeared on usnews.com
Update 05/17/22: This story was previously published at an earlier date and has been updated with new information.