Last week I saw my father’s medical records come to life on the screen in front of me.
It was quite a moment, and a long time coming. That we could do this at all is incredibly liberating and powerful for patient rights, education and for shared decision-making. So this seems an opportune time to add our voice in amongst the growing movement for patients and their caregivers to access their health records.
It was last year that Dad and I started to gather his medical records, in RTF document format (Rich Text Format, very similar to a Word document, but more compatible across platforms). The RTF document was downloaded electronically from the Electronic Health Record used by over 90% of primary care practices in New Zealand, MedTech32. The Practice Manager at my father’s clinic was able to perform this with just a few clicks on her screen, and yet she told me that we were the first people ever at my father’s clinic to request this to be done!
So, now we at least had his raw data (the past 8 years’ worth). But it is one thing to be able to read through a 30 page document detailing all the diagnoses, lab results, prescribed medications and doctor’s notes since 2007, but it is quite another to be able to be able to turn that raw data over many years into a health story. It would be hard to measure the benefits of being able to read my father’s complete Health Story at a glance – let alone have it available online for my father, my sister and myself (as his authorized caregivers) to all be able to see how that story is progressing over time with the data presented to be easily understandable and thus actionable.
And so it was around the same time last year our Lifetime Health Diary development team started to plan and create data processes that would let us take electronic and even paper text documents and turn them into structured data across time in order to paint an individual’s health story.
Finally, after a huge amount of work, creativity and strategic partnerships, a few days ago our development team processed the electronic text documents holding my father’s unstructured data from New Zealand, and turned it into this…
From the image it is very easy and clear to see all the medical data from my father’s various providers for the past 8 years. You can see that I have scrolled over “Medication Prescription” for 2015, and the small pop-up screen shows the source document name, the type of data (medications)and crucially the page number (P1) where the medication data is. My father, my sister or I – at our own computers whenever we wish – just have to click on that page 1 and be taken straight to the relevant part of the record for Medication Prescriptions for that time frame. Further, that important medical data point can now be related to everything else that may be impacting on his health at that time as well. Diet, exercise, mood, stress, etc. This is what holistic health is meant to be.
Having studied countless Electronic Health Record outputs for over 12 years now, it is difficult to describe what I felt when I saw this information appear for my father’s data as a genuine health story.
It’s a kind of magic.
Since my father is in Dunedin, New Zealand, and I am currently far away in Mexico City, that this can all be done remotely only adds to the sense of magic and of having achieved a huge step towards the Holy Grail of understandable and actionable data for my Dad, at our fingertips.
What are the steps to not just access but also understand and therefore be able to take action on your raw medical data?
1) First, recognize that it is your fundamental human right to obtain all of your medical records. It is your body, your health, your future. http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/righttoaccessmemo.pdf
2) Obtain your data from your providers http://www.healthit.gov/patients-families/accessing-your-health-information Preferably in electronic form, but if that is not possible, then paper format is much better than nothing. This step can be challenging as even my father’s provider while being very helpful and kind, had never done this for one of their patient’s before. Persist!
3) At minimum put the raw data on a shared Gmail account where you and your caregivers can at least have access to them any time. Ideally, I would say that if you can afford the processing costs to send the records to a company that process them in order to tell your unique Health Story. I am of course biased towards our company’s ability to do this – turning raw data into easy-to-read health stories is specifically what we do – so I will simply say that we are not the only ones who can help you put your raw medical data online.
4) Share your experience for others to learn from.
5) Get involved and become a Digital Patient Revolutionary.
Together we can change the world of healthcare to serve our needs as patients and caregivers by making our own health and medical data tell our unique Health Story. And that is worth fighting for!