Keeping track of health information: what you need to know
In a perfect world, your health information would start following you as soon as you were born. Every documented detail – vital signs, doctor visits, medical test results, diagnoses, prescriptions and hospital stays – would follow you like a beautiful magnetic cape, an extensive health history attached to you and accessible in one convenient place .
Unfortunately, the world has yet to develop a system that can track the volumes of health data you generate. You’re left to gather it yourself from each vendor, piecing together a patchwork of medical minutiae and milestones spanning decades.
“It can become overwhelming, and for some it’s seen as an additional burden of illness or care,” says Kelly Batista, executive director of the Brian D. Jellison Cancer Institute at Sarasota Memorial Health Care System in Florida.
How to meet the challenge? It boils down to four methods.
Use patient portals
Patient portals are secure websites that allow you to access your medical information from a particular provider, such as a doctor’s office or hospital, 24 hours a day.
“These portals include information about your medical history, test results and provider interactions. They also allow you to communicate with vendors, ask questions and schedule appointments,” says Batista.
Portals also allow you to:
- Check the notes your doctor wrote during or after your visit.
- Upload copies of your medical records.
- See what medications your provider has prescribed and request refills.
- Make payments to your supplier.
- Update your insurance information.
- Participate in telehealth visits (depending on provider).
On some portals, you can even add your own health observations. “It’s a private space where consumers can document information that is not accessible to the healthcare team. For example, you can tell what your mood is or add information you got from your fitness tracker. It’s a repository where you can keep all of this information in one place,” says Rema Padman, a researcher in health care informatics, analytics and operations and a trust professor of management science and health informatics at Carnegie Mellon University.
Use mobile health apps
You can also track your health information with mobile health apps – apps or programs that you download to a smartphone. “There are over 300,000 health-related apps to track walking, sleep, fitness, diet, chronic conditions like diabetes and more. These apps are becoming useful not only for tracking health conditions, but also for managing day-to-day events,” says Padman. “We are 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 room visits or hospital admissions. .”
Many apps give you access to your entire patient portal, including the same information you would find on the website version and the same ability to communicate with your medical team, schedule appointments and update information. This can be handy if you’re on the go or at a doctor’s appointment and need to share information with a provider who doesn’t have access to it.
You can also upload information from your patient portal to other mobile health apps, such as those that help you manage pregnancy or chronic illness. This puts even more information in an easily accessible place.
Keep hard copies
The old way of tracking health information is to use hard (paper) copies of your medical records. You’ll need to request them and then pick them up from a supplier’s office or have them sent by US mail.
Once you get paper documents, it helps to organize them in folders, boxes, or three-ring binders. “For example, a three-ring binder with tabs can easily organize a patient’s medical information into categories such as allergies, medications, diagnostic tests, and lab work. Assembling their own binder allows patients to easily rearrange and add information as needed. A useful addition to filing cabinets is the addition of 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 for a doctor’s review.
Keep electronic copies at home
Another way to track health information is to get electronic copies – files that only exist on a computer screen.
These files may include copies of medical records provided to you by:
Note that healthcare providers are required by law to provide records in electronic format whenever the provider has the ability to produce this type of copy (not just if it is company policy).
You can also create your own electronic copies of medical records by scanning paper records into digital format. Once scanned, name the files and organize them on your hard drive.
Yet another type of software logging is a spreadsheet. Create one on your computer to help you track doctor or hospital visits (include dates), medications, diagnoses, and tests (include results).
All software medical records can be loaded onto a USB drive and taken to a doctor’s appointment for review.
Disadvantages to consider
Tracking your health information can have drawbacks – some minor and some major.
For patient portals and mobile health apps:
- They are not accessible to everyone. You’re out of luck if you’re not tech-savvy or don’t have internet access through a computer or smartphone.
- They may charge a fee. Some health apps charge annual or monthly subscription fees.
- They are not all related. Unless all of your providers are in one large healthcare system, it’s unlikely that they’ll be able to see information across all of your different portals and apps. “These are piecemeal solutions,” Padman says. “What you do with an app is recorded there, but it’s probably not the information your healthcare provider or pharmacy has.”
- They can be vulnerable to hackers. “If there is a data breach, what are the policies to deal with 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 hard to know which organizations are doing it and who is profiting from 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 bit of homework before use. Make sure any health apps or patient portals you use are subject to federal privacy rules (this is more likely among apps and portals from large health organizations and doctors’ offices); proves that it can store your data securely; and clearly states that it will not use, sell or share any information without your permission.
For paper or electronic copies of your medical records:
- Collecting them requires a lot of work. “We recommend that patients obtain a printout of their visit notes, lab results, or any other diagnostic tests before leaving the office. At least it gives them a good start,” says Betty Long, president and CEO of a nurses’ advocacy group in Flourtown, Pennsylvania.
- You may be charged copy fees. Charges are only allowed to cover the cost of supplies, labor and postage.
- You may have to wait for the copies. A supplier has 30 days to comply with a request for documents and, in some cases, this period can be extended up to 60 days.
And any type of medical record (even electronic records) can get lost or develop errors if information is entered incorrectly. Stay in control by checking and updating your records regularly.
It’s not enough to have medical records stored where you can find them; you need to understand what they mean. “That’s a lot of information,” says Batista. “This is where you have the ability, via portals, to communicate with your supplier, ask questions and get feedback. Additionally, in our program, patient navigators are involved in education. »
Whichever method you use to track your information, experts agree it’s worth the effort. “Everyone has a different way of consuming data. What’s important is that you find the way that works best for you,” notes Batista. “It empowers you as a patient.”