This post is part 3 of a series describing the four key types of tools that I recommended to caregivers at a retreat earlier this summer:
- Journal/notebook, for notes and symptom tracking (see this post for details)
- Portable and up-to-date medication list (see this post for details)
- Organizer to keep copies of medical results and medical records
- Personal/family task organizer
In this post, I’ll explain why it’s important to keep copies of medical results and key medical records. I’ll then explain which kinds of medical information is most useful to keep, and I’ll describe a few ways that caregivers can do this.
Why caregivers should keep copies of medical results & key health information
[Related post with more details: How to Use a Personal Health Record to Improve an Aging Adult’s Healthcare]
Information is power and flexibility. When caregivers keep copies of medical results and key information, it’s easier to:
- Make sure a doctor has the latest important information, right at the time of a medical visit. This is especially helpful in case of an unexpected trip to the emergency room or to urgent care.
- Change doctors or get a second opinion. Sometimes it’s necessary, or desirable, to see a new doctor. Doctors can usually get medical information from other doctors, but it often takes time. When caregivers are able to bring key information along with them, a first visit can be much more helpful.
- Learn to better understand a medical condition. For many medical conditions, especially chronic ones, the status and progress of the condition often correlates to the results of bloodwork or other tests. (For example, diabetes control is often measured via testing the hemoglobin A1C level in the blood.)
- By keeping copies of results, those patients and caregivers who decide to learn more about health conditions — such as by learning from the Mayo Clinic’s site, or joining a patient community) are better able to understand the specifics of their conditions.
- When patients and caregivers develop a better understanding of their health conditions, they can then participate more actively in monitoring and managing their healthcare.
- Double-check the medical care. Although most medical care is good, sometimes things do fall through the cracks or get missed.
- When patients and caregivers have copies of the key medical information, it’s easier to double-check things and ask the doctor if you have any questions, or don’t understand an abnormality in the results.
 The most useful types of medical information to keep copies of
In my own clinical work, I see lots of older patients who’ve been seen by other doctors. Here is the kind of information that is most helpful to bring:
- Laboratory results. This means results of blood tests and urine tests. If you want to minimize your time collecting health information and want to know what’s most important and useful, this is it!
- Bloodwork results are especially useful, since they often include information related to blood count, kidney function, and blood electrolytes. For more on the most common blood tests ordered for older adults, see Understanding Laboratory Tests: 10 Commonly Used Blood Tests for Older Adults.
- At a mimimum, try to have a copy of the most recent results. Even better is to have copies of the last three reports, or copies of results from the past 1-2 years.
- Radiology results. These include results from tests such as xrays, CAT scans, MRI scans, and ultrasound tests.
- Having these results handy may prevent duplicate tests from being ordered, and also gives doctors better information at the time of a visit.
- Cardiac tests. These include tests such as EKGs, echocardiograms (which are ultrasounds of the heart), and tests for coronary artery disease, such as treadmill tests or special heart imaging tests.
- I find I use echocardiogram reports quite often in my medical decision-making, but all these test results can come in handy when trying to help an elderly person with symptoms that might be related to the heart or lungs.
- Pathology reports. Any time doctors do a biopsy, a pathology report summarizes the results. The results are usually needed to make sure a person gets the right care for the issue that caused the biopsy.
- Hospital discharge summaries. These are the clinical summaries written or dictated by doctors and nurses, and are meant to be read by other health professionals. (The discharge information packet that patients are usually sent home with is a very weak, watered down version.)
- They can contain excellent summaries of an older person’s chronic medical conditions, and also contain all important information about why a person was hospitalized, what happened in the hospital, and what should happen after the hospitalization.
- These are usually much harder for lay people to read than are test results.
- I recommend caregivers and elders try to get a copy of hospital discharge summaries so that they can share with another doctor on short notice if needed.
- Other clinical notes. These might include records such as office visit notes from the primary care doctor or other specialists, as well as notes from physical therapists, counselors, and other healthcare professionals.
- The usefulness of these notes is variable, and doctors often find looking through a big stack of such notes tiresome.
- Although I do request and look at records from other doctors, I don’t usually recommend that caregivers try to keep copies unless it’s easy for them to keep and organize the notes.
- Advance directives. These documents are meant to provide guidance for situations when a patient is too ill to make medical decisions. (Although it’s specific to Washington State, I really like GroupHealth’s page on the topic, because they correctly state that advance directives are not just about being terminally ill.)
- If there is a POLST, an advance directive, a living will, or a form regarding durable power of attorney for healthcare, it’s good to include a copy with the collection of medical information.
In a special class of its own is the up-to-date and portable medication list, which I wrote about in a previous post.
You may also want to include information such as allergies, a record of chronic conditions, and a list of past surgeries. However, I don’t really emphasize this to my patients because it is pretty easy to get much of this information from the patient or caregiver at the time of a visit, whereas people almost never know their latest lab results off the top of their head.
You can learn more about what information to gather and bring to doctors here: 10 Useful Types of Medical Information to Bring to a New Doctor.
Now that we’ve reviewed the types of medical information that patients and caregivers can keep copies of, let’s talk about how to organize and keep this information.
How caregivers can maintain a personal health record for an older adult
When patients keep their medical information themselves, this is a personal health record (PHR). Unlike the electronic health records that patients access through a patient portal, a personal health record is usually under the control of the patient and family, rather than controlled by a single doctor or clinic.
The advantage of this is that older adults can combine information from different providers in a PHR, and can keep their key medical information available even if they change doctors.
When choosing a way to keep and organize an older person’s health information, here are some things to keep in mind:
- How easy is it to bring the information to a doctor’s visit? Is it easy to print or make a copy of results? Can you invite other doctors and nurses to see the information?
- How secure is the information? For information kept online or on computers, encryption helps keep the data safe (although many people consider it a hassle to encrypt information on their own computers).
- How easy it is to share the information with a care circle? Many older adults have multiple family members involved in their medical care. Families also sometimes want to give temporary — or partial — access to a third party, such as a care manager.
And here are some options that caregivers can consider, to actually keep and organize records:
- Paper binder. This is an oldie but a goodie when it comes to organization, and I’ve seen it work for a number of families.Â
- Pros:
- Cheap and easy to set up.
- Copies of records are often given to families in paper form.
- Can use tabs to organize records within binder.
- Easy for another doctor to flip through records at a visit (especially if you use a three ring binder instead of a file folder). Also relatively easy for doctors to photocopy any records they want to keep a copy of.
- Cons:
- Binder can be lost; labor intensive to keep a back-up copy of records.
- Harder to share among multiple families members or caregivers.
- Can’t use digital technologies to search through a larger stack of records.
- Pros:
- Generic digital document storage system. Some families scan all records and save the PDFs in a folder on their home computer. This method can serve to back-up a paper binder system.
- Pros:
- Documents can easily be backed up online; this can allow sharing/access by other family members.
- Documents can sometimes be emailed to clinicians, or uploaded to a patient portal.
- Cons:
- Can be hard to later sort through records, especially if files haven’t been carefully named.
- Can be hard to bring all records to a doctor’s visit.
- Pros:
- Personal health record (PHR) online. These are websites designed to store health information from different providers. Some have apps to allow mobile access to the information.
- Available PHR sites and apps tend to change over time. (This is probably because the companies creating them are still trying to find a viable business model.) Search for “personal health record” online to see what might be available to you.
- Pros:
- Data is encrypted, and usually organized into useful categories (i.e. lab results, imaging results)
- Some services can import data from other apps or websites. Some can import a patient’s data using Medicare’s Blue Button data export tool.
- Some services allow families to fax or send documents to doctors.
- Cons:
- Entering results and information into an online PHR may feel time-consuming.
- The company might be using your data for marketing-related purposes.
- Personal health record companies can go out of business; although you should then be able to export your data, you might find the export is not easy to look through or review.
My main recommendations regarding keeping and organizing medical information
I do always recommend that patients and caregivers maintain some kind of personal health record (PHR), in which they at a minimum keep copies of test results.
It is perfectly ok to just maintain a folder or binder with this information on paper. However, keeping digital copies of the information provides a good backup. If you find an online PHR that makes it easy to enter information, this is a good option too.
If as a caregiver, you ever need to take an older person to see a doctor on short notice, having test results and an up-to-date medication list will go a long way towards ensuring that doctors can provide the right medical care.
How do you keep track of medical information?
If you’re a caregiver, I’d love to know how you’ve been keeping track of medical information.
If you’re a clinician or care manager, how do you recommend caregivers keep information?
To learn more, here are some related articles you might find useful:
How to Use a Personal Health Record to Improve a Senior’s Healthcare
10 Useful Types of Medical Information to Bring to a New Doctor
Understanding Laboratory Tests: 10 Commonly Used Blood Tests for Older Adults
10 Things to Know About HIPAA & Access to a Relative’s Health Information
allison j says
I am a nurse and a patient. Recently, I had a 2h appointment with a specialist at Johns Hopkins. I was quite unprepared for the zillions of questions I was asked. I had brought a binder with me because I think that works best at appointments. But because there were so many questions, when I got home, I decided to renovate and reinvent my binder. I access electronic records at home and have linked the different medical facilities together however, all medical facilities do not use the same system. Also, sometimes I like to highlight something specific or group results together. The paper binder helps to keep me organized.
Nicole Didyk, MD says
Good for you, Allison! It is a chore to get one’s paperwork in order but well worth the time investment in most cases. For some of us it’s a binder, for others an electronic tool. You highlight a common concern among health care consumers and providers, in that almost every institution has its own electronic medical record (EMR) system and they do not always talk to each other! I wish you well with your health issues and congratulate you for working so hard at self management and self care (which is what getting organized really is).
Amy Lane says
I use carbonite to back up my hard drive and am able to access the files from my phone when at the doctor’s. I scan in results and store on my computer but am able to not only see the files from my phone, but can email directly from the Carbonite app on my phone. I also use TurboScan to scan the documents from wherever we are. It scans as a PDF (or JPG), I email to myself and then save on the computer when I am home.
Laurie says
Have you come across any new digital Personal Health Record applications / websites that you would recommend? Thanks.
Leslie Kernisan, MD MPH says
I haven’t looked into available PHRs for a while now. I have heard that Healthvault is closing down. Please let me know if you come across anything interesting or useful!
Jan says
I have been a full-time caregiver for both my disabled elderly parents for over 10 years and have always maintained thorough folders or binders for their medical records much appreciated by the doctors we see. I carry the most current folder with me to medical appointments leaving older less important material at home in files. Over the course of those 10+ years, I have had to correct untold medical records in doctors’ offices or hospitals because of entry errors, transcription errors, etc. The quality of data entry staff skills has dramatically declined, and I see this as a potential danger to online medical record keeping for the future. On many occasions my notes have corrected the practitioners memory of what was discussed, procedures done, etc. It has been frightening the level of errors we’re run into. I see keeping all our medical information up-to-date and available as a real safety net in these times. Thank you for emphasizing the importance of these kinds of tools.
Leslie Kernisan, MD MPH says
Thank you for sharing these insights. Great that you have been able to help your parents in this way, I’m sure it made a great difference.
James Conner says
Is there a national database for medical records accessible by the medical and the insurance industry.
Some medical professionals will record incorrect information that needs to be checked and maybe corrected.
How does someone do this?
Leslie Kernisan, MD MPH says
Good question, as the issue of errors in medical records is an important one.
I’m not aware of a national database of clinical records. Not sure what insurance companies can access, in terms of records from when someone was not insured by them.
I will see if any of my colleagues with more expertise in this can weigh in.
M. says
A really great article, Leslie! I’ve poked around your site a bit and am very impressed! I immediately shared your article on what to have the doctor check after a fall with a caregiving group I’m a part of. Someone is always asking that question!
I’ll add to this conversation that I’ve had some great luck with CareZone for keeping notes and records. (I basically do my own version of chart notes in the app during all medical appointments.) It’s a great app that is secure and does exactly what I need. I started by using Cozi to keep a calendar and contacts but it’s not very secure and not really made for what we needed. In addition to the journal feature, I use in CareZone and the medication lists, I can keep all of their medical contacts there, a calendar of appointments, and I can give other family members access and send them requests for help, and do all that for more than one person in my care.
In addition, I am still going to use a binder for record keeping for more incidental documents that have been getting lost–mostly stuff from Medicare and the VA, as well as how-to’s on health and home care for other family members to refer to when I am not around. It’s kind of a LOT to put together and I imagine will need regular updating, but I think that it will be helpful when needed.
Anyway, thanks for the great article on this topic! I have so much appreciation for professionals like yourself who see how much help family caregivers need and are going the extra mile to provide expertise and assistance.
Leslie Kernisan, MD MPH says
Thanks for sharing this feedback and especially for sharing your experience with CareZone! It’s so helpful for readers to hear from other real live family caregivers. Agree that CareZone has some nice features and know some other families who find it quite useful.
A physical binder is also quite helpful. That said, I’ve been quite glad to be able to search Evernote and Google drive when looking for something, so you might consider creating a digitized collection of documents and resources as well. Good luck and thanks for joining our community!
Emily says
Thank you for all of the wonderful information you provide. If I’m making an appointment with a specialist or seeking a second opinion, is it more usual to send my medical records ahead of time or just bring them with me? Is this something that varies from doctor to doctor, whether they’ll look at someone’s record in advance of an appointment? Thank you.
Leslie Kernisan, MD MPH says
Interesting question, thanks for posting it.
I think different providers and clinics vary, in terms of their processes and need for medical records ahead of time. Generally I think it’s a good idea to send them ahead of time, but that said, the clinician may not have had a chance to review them until right before your visit, or sometimes even right during your visit.
If you are able to send them ahead of time, I think it’s a good idea. You may also still want to bring along a copy, just in case what you sent ahead has been misplaced (this has been known to happen). If your goal is to get the most out of your visit, it’s a good idea to cover as many bases as possible.
Amy M. says
Hi Leslie,
I would like to help my niece get to the bottom of a years long back issue that is causing chronic pain. My instinct is to sit her down and start from the beginning, documenting dates, the initial issues, appointments, treatments good and bad, all visits, medications, etc. I think a small part of the problem is not having all the information in one spot. My instinct is to create a spreadsheet of some sort, and have all documents as attachments. Is there a better way? I feel like I am being an investigator at this stage.
Leslie Kernisan, MD MPH says
Hard to say what is the exact best way, but in general, I think you are on the right track. For a persisting or significant problem, it can be extremely helpful to create a detailed timeline of what happened, what was tried, what was the result of that intervention, and so forth. Investigating and creating a useful summary is very important. It shouldn’t have to be the responsibility of the patient or family, but the truth is that many health providers won’t have time to do it, so good if you can.
You could certainly start with a spreadsheet, but eventually, for a doctor to read it, some kind of outline will probably be easier.
There is a free program online called Workflowy.com that makes it easy to outline and move things around.
You could also consider putting the supporting documents in something like Evernote or an online Google drive folder. The main advantage of this is that you will be able to search the pile of documents more easily, e.g. you could search “MRI spine”.
Last but not least, you might be able to find an online community of patients and families dealing with a similar problem. They might have good suggestions as to how to organize and maintain a timeline of the problem. good luck!
Jenn says
Thank you for your guidance, Leslie. I very much appreciate it. I’m currently caring for my 90 year old mom, who lives in an assisted living facility. I am responsible for advocating for her wellbeing on all levels, and tracking her care. It gets pretty overwhelming sometimes, and I appreciate your, and others, suggestions.
Best wishes,
Jenn
Vicki Wells says
How does one go about obtaining personal health records? I have been trying to get paper copies of everything I can going back at least 10 years, but the medical facility where I was treated for 50 some years, has recently sold and are in the process of sending all old files to the salt mines. The new owner has just started out with whatever new tests, diagnostics, etc. They did not seek to “carry over” any of the old files. I called the facility and got a big runaround on how difficult it would be to get a copy of all my paper and digital records they still have on file. It would take too much time, or would cost me too much or any of several excuses. She found one EKG that she said was 16 pages alone. I have been trying to download or copy what I can from my different patient portals, but it only goes back to 2015. (I now have 3 portals since I moved to a new facility when my Dr leftover a year ago.)
Leslie Kernisan, MD MPH says
Oh, that does sound frustrating.
To obtain copies of your health records you need to be persistent, and it also helps to be aware of — and potentially remind your health providers of — relevant laws regarding your right to access your health information.
At the federal level, these rights are largely guaranteed by HIPAA, and then state law also usually addresses a patient’s right to medical information and provider responsibilities in maintaining and providing access.
I have written more about HIPAA here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information
I would definitely recommend checking with your state regulations on patient access to medical records. Just because they say it’s so difficult doesn’t mean you don’t have a right to have them, so find out what you actually are entitled to, and then push for that if you can.
The HHS.gov website also has good info on this, see here: https://www.hhs.gov/hipaa/for-individuals/faq/index.html.
I’m sorry to say that it’s pretty common to encounter problems trying to get records from previous providers, especially when one has accumulated a long and lengthy record. This is why I recommend people create their own personal health records as early as possible in life, and I think it’s great that you are trying to do this now.
There are some personal health record companies that will chase down your records on your behalf. This type of service does usually cost money, but it might save you some time and hassle.
Another option would be to consider a consultation with a doctor specialized in second opinions or in patient advocacy; such providers usually have experience retrieving records from others and as health providers, we usually aren’t charged the fees that individuals may get charged. A clinician will also be able to sort through your information and figure out what is most important to keep.
Good luck!