Introduction
Medical records can be a big issue. They accumulate over a long period of time. They come from multiple different sources. They are recorded in different formats. And what’s more, they always seem to be someone else’s responsibility.
My career spanned the time from handwritten notes with hospitals paying transcribers to type the notes to include in records. Most offices functioned with the scribbles of doctors. Now we have electronic notes that operate on very sophisticated software platforms. They’re expensive and it is a huge business and considerable expense to the medical system. There are just a few companies dominating the medical record business. The term that’s been adopted is EMR (electronic medical record).
Great efforts are made to have different systems communicate with each other
It doesn’t always work out as intended. Digital images of scans and lab reports are incorporated.
Invariably the situation arises where you and your medical record are not in the same place at the same time. The missing data often triggers repeating the test. I came from that world. In emergency medicine we often requested the hospital records for the patient’s last admission. Invariably, they were slow to appear and we would order new labs and they may have had that lab done recently.
The burden has shifted to you
As records fragment, the task of holding our health stories together increasingly falls to the patient. When key details are missing or hard to retrieve, diagnosis doesn’t pause. Clinicians move forward with whatever information surfaces first.
Record-keeping has become more than a clerical task. It has become key to getting effective care.
I believe you need to take responsibility and create your own data source. Some might call it a personal “Health Journal”. It’s your personal system for keeping your essential health information in one place, under your control.
It doesn’t fix a broken healthcare system, but it can smooth your experience by keeping critical details available when decisions need to be made.
Why this matters now
Doctor visits grow shorter and the numbers of patients they see each day grows higher. Their ability to retrieve and construct your history has dwindled. That is especially true if you are being seen in a clinic that hasn’t seen you before.
A portable medical record is designed for that reality. Whether digital or on paper, it keeps essential details at hand when memory, portals, or time comes up short.
The risks of missing information are well documented. When a test can’t be located or is slow in showing up, that test is often repeated. It’s a recognized major threat to patient safety.
If you carry a portable health record, it can reduce time spent reconstructing history. It will reduce frustration on both sides of the visit.
Availability can change how an encounter unfolds. When patients can clearly summarize their history or share key results, visits tend to move faster, and decisions come into focus.
All of the facts must be present and available, or the direction of pursuit may be off. Errors are more likely.
What about patient portals?
Software solutions are appearing such as MyChart. These tools can be genuinely useful, offering test results, visit notes, and messaging. For care delivered within a single health system, they often work as intended.
The problem is that patient portals are built around institutions rather than continuity. Each health system maintains its own record (usually a proprietary EMR system). Those are organized by encounters, departments, and billing events. It’s a system that documents the delivery of care, not how illness unfolds over time.
Portals are designed to preserve data but not to preserve the narrative.
A lab result may appear, but why was it ordered? How did it change care? That insight may be in a different note, or it may not exist. You may be needed to provide that detail. Write it in your Health Journal on the timeline. Fill the gaps.
Even though there may be a time stamp, the progression along the timeline must be assumed. The gaps are rarely documented. What happened during the gaps in the data?
When patients change doctors, move residences, switch insurers, or see specialists across systems, their history splinters into parallel timelines.
If that care goes from one system to another, it becomes very fragmented. What looks complete inside one portal is often only a piece of a much longer story in another.
The patient assumes the story is all there. “The doctors know it or can find it.”
In fact, the important things may not be in the record.
Even within a single system
Even within a single system, accuracy isn’t guaranteed.
Research bears that out. In a study of closed malpractice claims, published in JAMA, electronic health record issues were identified as a potential contributor to diagnostic errors in about 61 percent of cases, most commonly when test results and related information failed to surface during visits.
Like it or not, the burden of continuity of the record has shifted to you, the patient.
Your personal Health Journal
Keeping your own Health Journal, in whatever form you choose, makes this task possible. It doesn’t replace patient portals. That’s one of the sources for you to pull data.
Most portals allow patients to download key documents as PDFs.
This journal becomes the place where the story is reassembled and told. You are the best resource to fill in the time gaps about what happened between data points.
What to include in your Health Journal
Your Health Journal works best when it’s selective. The goal isn’t to recreate your entire, full medical record. The goal is to tell the story. Not to tell it in completeness but to summarize the important parts of the story and to make the most critical information easy to find when it’s needed.
What matters according to research is summary, clarity, and attention to recent events.
Treat it as a resume. What is most important in making decisions now?
Give a current snapshot of your health.
That snapshot is the foundation of your Health Journal. Most recommend a list at the forefront that includes:
Active diagnoses or conditions that may not have a diagnosis
Current medications, with doses and schedules
Current supplements (that could interact with meds or affect care)
Known drug allergies or adverse reactions
Implanted devices or medical hardware as well as history of surgeries
This is one page and a summary.
Include a list of recent results over the last few years that have shaped care:
Key lab results
Imaging reports that are still clinically relevant
Pathology reports associated with ongoing conditions
It is simply, A one-page summary with the key points.
Major medical history
A major medical history provides context without overwhelming detail. Summaries of relevant surgeries, hospitalizations, chronic illnesses, and significant injuries.
This should take the form of a short timeline.
Keeping a current list of clinicians, their roles, and contact information can prevent delays when coordination is needed, particularly during referrals or emergencies.
Keep current insurance and planning documents
Include a copy of your insurance card, along with any advance directive or health care documents that guide care when you may not be able to speak for yourself. Keep this section clearly marked and easy to share if necessary.
What’s an Advanced Directive?
What if you are incapacitated? What if you can’t talk. It is estimated that this occasion occurs many more times than is reported. After surgery many are under the influence of drugs and they never anticipated a decision needed when they might not be capable of reasoning. Another term assigned to this idea is designating a proxy. Someone that can make decisions for you if you are unable. If you haven’t considered and discussed this topic you should.
How to build your Health Journal
You don’t need special software. Most Health Journals come together gradually, test by test, visit by visit.
Continually edit.
It is layered. You should keep a full archive of medical records. That is separate. This personal Health Journal is the edited summary. It is an up-to-date record ready for actual visits. And it focuses only on what currently shapes care, keeping the rest out of the way.
Start with what fits your habits and choose a format you’ll use and keep up to date.
Some people prefer a digital folder that they can search and share easily. Others feel more comfortable with a paper binder or accordion file that they can flip through in an exam room. Many use both: a digital version for storage and sharing and a slim paper summary to take with them for an appointment.
If you aren’t likely to use it, then it will be worthless. You’re the key to the success of this measure.
Download records from patient portals. Request copies of recent labs, imaging reports, and discharge summaries. If you have had imaging done elsewhere, request a digital copy to save.
Focus on the past few years on the conditions that currently shape your care.
Group documents by type, then order them by date, with the most recent on top. Clear labels matter more than exhaustive filing. Create a folder labeled “ Recent Labs.”
If you’re doing this digitally, develop a naming system. I suggest dates first, then the test or visit, then the provider.
Provide a personal narrative
Providing a personal narrative is one step patients often skip. Most clinicians find that the most helpful.
After a visit, record what changed. Is there a new diagnosis? Was there a medication adjustment? Is there a change in the plan or is there an observation period? Writing a few sentences can save struggling to reconstruct later.
This is a living document that is constantly changing and not a project you finish.
Update it after each visit. Remove duplicates. Remove outdated medications. Edit.
Send the files to your phone so they are always with you.
When this matters most
Tracking changes become critical when care crosses boundaries. It will be most helpful when there is a referral to a new specialist or for a second opinion. If you move between health systems, you absolutely need this. You can share your record rather than trying to reconstruct it from memory.
You don’t need to manage the system. You just need a single place where your story doesn’t get lost.