By Simone Myrie
Ed. note: This guest post by Simone Myrie of the Office of Consumer eHealth, Office of the National Coordinator (ONC) for Health Information technology, US Department of Health and Human Services. In it, she explains how electronic health records and Blue Button can help cancer patients, survivors, and caregivers as they navigate their cancer journey.
No two experiences with cancer are alike, but there are certain things that almost all cancer patients and their loved ones share in common. From getting a diagnosis, to coordinating care among doctors and at home, and on to long-term survivorship plans, the cancer experience is one centered around information. Some of the information we seek is mostly objective: What can I expect this disease to do? What are my treatment options? How can I improve my odds of beating cancer?
But some of the most important information you can gather, keep track of and share is information unique to you: Your own health records. The visit summaries, clinical notes, test results, medication lists, treatment histories, and other documents represent a critical picture of your individual cancer experience. This information has implications for your individual choices, your professional care, and the care you receive from loved ones.
Your Health Records and the Blue Button Movement
Blue Button is an initiative to help patients and caregivers access their health records online. Last year, we wrote a guest blog giving an overview of Blue Button when the initiative launched. But the Blue Button movement is about more than simply downloading a copy of your health information. We want you to: "Get It. Check It. Use It."
Get It: Access Your Health Records
You have a federally-guaranteed right to access your own health records, and that right extends to getting those records electronically if you prefer (assuming they're available in that format). You may have to request this information from your health care providers, but these days, it's becoming much more common for doctors, hospitals, and others to make this information available directly to patients online, typically through password-protected web sites. Still, not all providers have gone electronic, citing cost and other issues as barriers. The Centers for Medicare and Medicaid Services (CMS) Meaningful Use Incentive Payment Program provided resources to help some (but not all) providers to adopt electronic medical records.
Often the hardest part about getting your health information is knowing where to start. ONC encourages health care providers and others to use the Blue Button icon on their web sites to make it as easy as possible for patients to find where to download their own data. But not everyone uses this icon, which can be confusing.
To help solve this problem, ONC has created the Blue Button Connector, a web site that allows you to search for your providers and find out whether or not they offer health records online, and if so, how to access them. The Connector only recently launched and will continue to grow as more organizations create their individual page profiles and get listed. If you can't find your provider on the Blue Button Connector, they may still offer online access. Check with your provider's office and ask them if they offer online access to health records for patients, and how you can start using this feature. If they don't offer online access, you can still request your records. ONC has a web page with some tips for how to request the records you need.
Keep in mind that while your health care providers are legally required to keep your information private and secure, they cannot protect copies of your records that you keep for yourself. ONC also has a web page with some advice about keeping your personal information private.
Check It: Make Sure Your Records are Accurate
Almost every patient experiences some challenges working with multiple doctors and health care services, but for cancer patients, this process can be challenging. Even simple treatments may involve your primary care doctor, an oncologist, specialized treatment centers, labs, and pharmacies. For some patients, add in surgeons, radiologists, therapists, and other specialty professionals. And then you may also have caregivers at home: spouses, parents, children, friends, and others.
Each person involved in your treatment - and especially you - rely on accurate, timely information to keep you safe and ensure you receive the best care possible. Once you have your records, check them to make sure they're complete and accurate. Look at:
- Your personal information. Is the information correct that identifies you and how to contact you? Is the information for your emergency contact(s) correct and up-to-date?
- Your diagnoses. Is the record of your health conditions correct and up-to-date? Is anything missing or inaccurate? Has anything changed?
- Your medications. Is the list of medications you take complete and are the dosages accurate? Are there any medications on the list that you no longer take?
- Your treatment records. Is the record of your treatments (e.g. chemotherapy and radiation) up-to-date and accurate?
- Your tests. Are any test results missing? Do your doctor's notes reflect the test results accurately?
- Your care team. Is the list of doctors and other providers you see accurate and up-to-date?
- Your advance directives. Do you have an advance directive in writing that identifies your preferences for what you want or don't want at the end of your life? For example, do you want to be resuscitated if your heart stops beating? Do you want to be put on life sustaining equipment to keep you alive? Or do you want to pass quietly in comfort without medical measures to keep your heart beating?
Remember, when you find problems with your health records, you can request corrections or additions to make sure they're accurate and complete. If a provider refuses to make a requested correction, they must provide you with an explanation. If you disagree with the refusal, you have a right to submit a letter to include with your records.
Use It: Tools to Engage With Your Health
Think about big projects you might take on. If you build something, you first need to get directions, gather your tools, collect the materials, and then check everything to make sure you're ready to go.
Fighting cancer is a big project and perhaps the biggest challenge you'll ever face. Just gathering your health information and making sure it's accurate prepares you to take simple but powerful action to be part of your care:
- Gather information from your electronic records into a printed-out document that summarizes your care. You can hand it to any care provider when you see them for the first time - or even email it to them ahead of time - so they have all the information they need from the first moment.
- Share that information with family and close friends so they can help you in any situation where you can't speak or advocate for yourself. Some providers have systems that allow you to electronically share your health information with others you trust, like your family members or other care team members. If they don't allow you to share your information electronically, you can always share your personal copies with others you trust.
- Combine information about your medications, treatments, and care with your own observations about your health, such as your energy level, eating habits, and side effects. A few providers offer a place in their online record systems for patients to record their own information, but it's not common. There are apps to help patients keep this kind of daily health journal.
As with any big project, you may wish to seek out additional tools to help you get more engaged, overcome obstacles, and win your fight against cancer. Today, more tools than ever exist for patients and caregivers, particularly those who come prepared with complete, accurate health information. Examples include:
Navigating Cancer & Blood Disorders, a web site featuring tools for cancer patients and survivors to use to help organize and track treatment information, along with a large library of educational materials and community forums.
Microsoft HealthVault, one of many free Personal Health Record platforms that integrates with electronic record systems from a number of healthcare providers and device makers, and offers a place to compile, share, and add to your health information using the records you receive from multiple sources. The American Cancer Society's Circle Of Sharing is one of many tools available on this platform.
And if you want to have your information on your smartphone, iBlueButton by Humetrix is an app for iOS and Android that works directly with your health records to offer patients and caregivers an easy, pocketable way to carry, read, and share their health information with trusted parties.
You Deserve All the Help You Can Get
Getting your health information and accessing free resources like those above can provide good help for you, your healthcare providers, and your loved ones through this difficult time. Getting, checking, and using your health information paves the way for getting more involved with your health.
You can learn more about Blue Button and resources for patients and caregivers at HealthIT.gov.
Ms. Myrie is a public health analyst within the Office of Consumer eHealth, Office of the National Coordinator for Health Information Technology, US Department of Health and Human Services.