Patient-Controlled Health Records: Why is it taking so long?


On July 1st 2012 the Australian government made available the ability for Australian citizens to register for access to their own patient records on line.

Amongst other things the service will allow patients to update information themselves about medicines and substances that they are taking, allergies that they believe they have, contact details and details of other individuals who participate in their care.

The system will also capture information from registered healthcare providers across the country with regard to summary healthcare information, significant healthcare events, discharge summaries from medical facilities, insurance information, and letters created by healthcare professionals.

It has, for a  long time, been recognised that development of information management facilities in health care lags significantly behind advances in treatment and diagnosis technologies.

Many hospitals and even small medical practices have, in recent decades, recognised the risks inherent in poor information management and decision support.  As a result there has been significant investment in development and effective deployment of information management and process support facilities focussed on centralising, standardising and, in more enlightened institutions effectively-sharing, information to support patient care.

Lifespans are increasing and life-style and chronic-conditions are becoming more significant challenge in the spectrum of healthcare challenges. The Australian move to a nationally recognised, patient controlled service is a logical step forward.

The recognition that the appropriate “owner” of information about me that is of primary value to me is me is also crucial to moving forward in terms of healthcare information management.

I have no objection to sharing this information in an appropriate (anonymised) form for the improvement of my treating clinicians’ practices or for improving the effectiveness of healthcare planning. However, there must be “no decision about me, without me” and so it is important that I know, as in the Australian model, who has access to my health information. I also want to know who has accessed my health information and where my healthcare information has come from.

I believe that my view in this case is a rational one, based on sound logic and, to some degree at least, common sense.

However I have witnessed the apparent apathy with which most people appear to approach this subject and wonder why the take-up of such services is generally low.

The issue of user acceptance and motivation is an important one. With most technological innovation, there is a critical mass which, if it is not reached, will limit the usefulness of the tool.

In 2001 I led a team of doctors and other professionals to develop an electronic patient record which was similar to that currently being “rolled out” in Australia. The DoctorGlobal(tm) patient record could be populated by clinicians, by patients, and by carers and access to the record could be completely controlled by the patient. Provenance of all information was visible and views could be provided depending on the role of the user.

All activity was audited and patients could see at any time who had accessed or updated their records. The technology used was state-of-the-art at the time and would still be secure today. The cost of the record was negligable.

The project was lauded in the popular press with glowing coverage from major Newspapers in both Australia and New Zealand. Overseas, in the US and the UK there was also considerable interest. In a short time we even had consultant clinicians providing specialist services to a small group of patients using the technology. Both patient and doctor could collaborate around a single centralised “source of truth”.

Unfortunately the take-up and use by governments and individuals was very limited and although the company has gone on to some success developing software for the US mental health sector our dreams of a wider deployment were not realised.

The issue with the DoctorGlobal health record was the very thing that makes the patient owned health record the RIGHT thing for patients. In other words, the patient’s ownership of the record, with return and benefit primarily to the patient, is the reason that a single centralised repository for patient information is such a difficult challenge.If the patient record is to reach its potential it must be populated by people and businesses other than the patient and the return on the time and energy invested by people other than the patient is difficult to demonstrate.

I am left with the profound belief that the future for patient owned health records will be in the hands of those organizations, government or otherwise, who manage to convince patients (i.e. You and I) of how important it is for us to invest time and energy in the “ownership” activity. It is our active participation in the development, management, care and feeding of our health information repository that will convince our doctors, nurses and other carers of the importance of this resource to our health care.

What do you think about the Australian Government initiative and patient owned health records? Please write to me at asnoxall@malomatia.com and share your thoughts an opinions.

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One comment

  1. Why it is taking so long for me to be able to access my own patient records, it is a conundrum. In my view it is the “nanny state” syndrome that prevents this from happening. Technology is available. to allow this situation happen. I am best placed to initiate a correction in my records if found them incorrect or incomplete therefore I ( and I believe) many other people would rather find out my record is incorrect and get it corrected than not know if the record is correct and have no possibility to have the record put right.

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