I attended the HIC2012 Conference this year, only Day 1, but WOW what a day it was! This is not normally a conference I would go to. It's all about eHealth, Personally Controlled Electronic Health Record (PCEHR), health informatics, health & communication technology. There were some fantastic speakers this year, including our own Prof. Hughes, plus workshops on social media, activity based funding, impact of mobile technology on health and health information during a crisis, to name but a few! I was very keen to attend day 1 because of Regina Holliday and also the sessions on social media and mobile health.

The first keynote speaker was Jane Halton from the Department of Health and Ageing, presenting to us the view of eHealth and EHR from the Government.

Jane described the potential of PCEHR and gave us a snapshot of where things were up to. Still a fair way to go, but slowly we're going to see a robust, and hopefully, effective personal electronic health record. Encouraging consumer uptake will be a hurdle too, at least initially. Can it be trusted?

A 'pilot' of EHR was started in the Northern Terriroty. Jane explained it's initial successes. Was hard not to be optimistic about this!

So PCEHR as launched on July 1 and there has been a slow but steady growth in Australians registered, with minimal marketing.  Development continues. Jane said Australia was "the little economy that could". With our relatively small size, Australia had the potential to really make EHR work. Hope so- patient safety, which also means always having access to relevant information, is paramount.

Next up, and VERY much anticipated was Regina Holiday: artist, patient advocate, passionate crusader for the right to your health data, American, mother, wife, leader of The Walking Gallery, prolific & effective social media user, Little Miss A-Type Personality, a force to be reckoned with!

Regina paints the concepts discussed at conferences and presents them through a patient’s view. Above is a picture of the near blank canvas.

I can never do justice to Fred and Regina Holidays story of how terribly wrong a healthcare system can go. You can read her blog  and find out about her work, her art, The Walking Gallery, her fight for the right to be able to access your health data when you need it most, or even when you don't http://reginaholliday.blogspot.com.au/ The theme that underpins Regina's story is the one of  health data and that without being able to access it easily, her husband's care was significantly compromised. And that is probably a huge understatement. Some elements of Regina's story are unbelievable, that was the extent of mismanagement, lack of care, stifling bureaucracy. However there wasn't a dry eye in the house because everyone knew that it could have been them, or their parents or children. Even in Australia.

Immediately after Fred's death Regina began painting a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by Fred and his struggle to get appropriate care during 11 weeks of continuous hospitalisation at 5 facilities. Regina told us this story.