It's all about me.  I want an electronic health record that can be shared by my health care providers.

Let me explain.  I have a complex and on-going health condition.  In October 2002 I was diagnosed with secondary or metastatic breast cancer in the bones.  I started on the cancer journey in 1996 when I was diagnosed with breast cancer.  By now I have had experience in dealing with many aspects of the health system.  I have had experience in both the public and the private hospital system.  I have been both an in-patient and an out-patient.  I also visit my GP and have used other community-based professionals.  I still carry my x-ray films in a plastic bag between the radiology clinic and the doctor!  Can't we do it better?

I want to have confidence that all the information held by the health professionals about me can be shared.  To do this I need to have confidence that I can be correctly, quickly and individually identified.  While for some people their name and date of birth and maybe their address might be sufficient, I believe an individual and unique identifier is necessary.  Why can't we use our Medicare number?

We need to start now.  An electronic health record is only useful when it holds information and it is unlikely that historic information will be added easily.  We need leadership.  We have had nationally supported pilots for a shared medicines record, Mediconnect, and for a shared health record, Healthconnect.  Work is progressing slowly on standards through NEHTA - the National e-Health Transition Authority. But I feel a sense of frustration that nothing seems to be happening. Why can't we make a start?  Who will take on this leadership?

Yes there lots of issues to be resolved.  How is this national electronic record going to be built?  Who is going to own it?  Who is going to own the data?  What information should be accessible?  How will our privacy be assured?  Should we build it gradually?  Should we start by sharing some basic information like medicines and add other information (for example pathology, x-rays etc.) as it becomes possible?  Which health care providers should have access to the information?  Who should have a unique provider identifier?  How is this handled in a hospital or clinic environment?

I am sick and tired of having to tell my story over and over again - and hoping like anything that I am remembering it properly - and not leaving out some key detail that could make the difference to some treatment.  I want multiple health care providers to be able to access my information - for example, when I have been referred to a community nursing team I want them to have access - it shouldn't just be doctors.

Finally there is another reason why I support the standards approach to the establishment and functioning of the electronic health record.  I see huge benefit in using data to inform public health policies and procedures.  With the huge and growing health budgets it will become imperative to ensure that we are achieving the best health outcomes for the investments being made.  It is only with the good use of secondary data that this can be achieved.

Yes there many issues that need resolution, but let's give it a go and make it work for all of us! 

Helen Briggs has been an active health care consumer since retiring from the Commonwealth Department of Health and Ageing (DOHA) in December 2006.  Her particular interests include electronic health records, data linkage and the quality use of medicines.  These interests stem from work Helen undertook after joining DOHA in 2001.

Since the 1970's Helen has worked in health and community services at national and local levels, for both government and non-government organisations.  She was particularly involved in public administration when the ACT became self-governing.  Areas of particular importance to her at that time included aged care, disability services, children's services and community development.  In 2006 she was awarded an OAM for services to the community, especially disability services, in Canberra during the 1990's.

Living with advanced breast cancer has also added a new perspective to Helen's attitude to life.  She is enjoying her retirement and doing many different things in Canberra that she never had time to do before.