Category Archives: patient empowerment

The Jigsaw Diagram

If you have read some of my previous posts or followed me on Twitter it is likely you have seen my “jigsaw” diagram in its various incarnations. I drew it, initially, to try and understand the relationships/causes between the various conditions I have ended up with and to make sense of 30+ years of medical records which I obtained, in one go, from three Health Authorities. The notes were a mixture of handwritten ward notes, typed letters and a raft of pdfs on CDs. I was amazed that they stretched all the way back to 1978.

Medical Records – from 1978 onwards

The diagram started out very simply.

Crohn’s Jigsaw – Version 1

It then dawned on me that it would a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This second illustration is the first development of the early version.

Early development of first diagram

I attached this more developed version to a Tweet during a #patientchat to illustrate how I like to communicate. The very positive response that I received from both patients and doctors was very gratifying. There were a number of requests for the template I used. I have therefore removed the text that was specific to my case and saved the file in both the original Keynote format and a Powerpoint format.

If you click on the links at the bottom of this post you will be able to download the appropriate file. Please feel free to use them however you wish. I hope you find it useful and would be grateful if you could credit me if you use it.

This templte should get you started on mapping your medical history

Here’s the most up-to-date version of the diagram, taking the story up to the Upper GI endoscopy in December 2019

Updated – December 2019

…and at one point someone set me the challenge of making an interactive version. Taking the initial, simple diagram I added more “nodes” that when clicked would open up the relevant documents or test results.

The link below will take you to a web based version, although it has not been updated for a while. It was not too difficult to set up but needed a knowledge of “mapping”. The most time consumng part was redacting personal details from the documents.

http://www.wrestlingtheoctopus.com/MedRec

…and then taking it to its logical conclusion, and with thanks to the example set by @MightyCasey, here’s a temporary QR tattoo. It does work. Try pointing your smartphone at it.

…and finally I decided to see how easy it would be to animate the Jigsaw to tell the story in 90 seconds. Here’s the link :

Crohn’s Jigsaw – The Movie (1080p)

Templates

Medical Jigsaw – Keynote Template

Medical Jigsaw – PPT Template

Medical Records

A subject I’ve written about before but always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test results. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered very little. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 onwards I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

Information Overload?

My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called Horos which opens and views the files.. Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. Here’s my chosen format :

Future Developments

There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?

Watch this space…..