How much access to information is appropriate?

AUTHOR: Anonymous

I recently had an interesting conversation with a GP who was looking for a software solution that would enable his patient’s to have full, real-time and unrestricted access to their own record that he held at his surgery.  Not just a sanitized, carefully curated summary – but the entire record – warts and all.  Every note, every observation, every test result, every comment that had ever been written.

We are seeing an international trend allowing greater transparency for and engagement with consumers within the health care system.  But how much access is appropriate?

I started my working life decades ago training in a regional hospital to be a Registered Nurse.  It was back in the days when doctors and nurses regularly used abbreviated slang and acronyms in patient notes.  Time poor and often completing the paperwork well after our shift had finished, we were all probably grateful to share and understand each-others “shorthand”.

Of course there were the serious and “industry recognized” acronyms such as “NAD” (No Abnormalities Detected), “CVD” (Cardio Vascular Disease), “OC” (Oral Contraceptive) and “MI” (Myocardial Infarction) to name just a few.

But every now and then some “informal” abbreviations appeared in patient notes.  Who remembers seeing “FLK” (Funny Looking Kid) or “PFO” (Pissed and Fell Over) or perhaps the more obscure and potentially fatal “MFC” (Measure for Coffin) scribbled in the margin of a patient’s notes?  The thought that a patient might ever read these notes and perhaps take issue or offence with such language, was something that was rarely discussed in those days.  I no longer work as a nurse but I doubt that any practitioner, institution or professional indemnity insurer today would ever allow these offensive terms anywhere near a patient record.

And rightly so.

As MSIA members we have all experienced the introduction of My Health Record (formerly the PCEHR) and witnessed the considerable discussion and debate surrounding who, why and how records are accessed.

But what about private practitioner-held records in private businesses?

Patients’ access rights to their own information held within these records is enshrined in the Privacy Act 1988 and the Australian Privacy Principles.  But usually such access is provided in a formal and structured way.

What if patients could look right through their entire medical record at any time of day or night?  Would they be happy with what they saw?  Would they understand it?  Would it cause confusion or unnecessary worry?  What implications does it have for designers of medical software?  Would it change the way our customers user their software? Will they learn to spell “Diabetes” correctly?

It’s enough to make us all have an “AHF” (Acute Hissy Fit) or is it “SEP” (Some Else’s Problem)?


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