Monday, February 25, 2013

E-Health Records and Consumer Privacy Issues

Up until now every doctor, clinic or hospital you have visited has maintained a separate record of your health. But now, with your consent, you can have an e-Health record (called a PCEHR or Personally Controlled Electronic Health Record) created to supplement your health records by linking key information about you. The idea is that wherever you are in Australia, no matter which doctor or hospital you visit, a summary of your healthcare information will be available to assist in your diagnosis and treatment. This information might include medications that have been prescribed to you, any allergies you might have, and treatments you may have received.

In managing your PCEHR, you can set controls specifying which healthcare provider organisations and nominated representatives may obtain access to your record. Advanced access controls allow you to limit access to the whole of your PCEHR and/or to limit access to specific documents within your record. It is also important for you to talk to your healthcare providers about the type of information that can be uploaded to a PCEHR, as well as advising if there is are any records you do not want uploaded to your record.

The Office of the Australian Information Commissioner (OAIC) recently distributed a number of draft fact sheets providing comment around some privacy issues of current relevance to the PCEHR. The topics include consent and handling of personal information, emergency access, and how to manage your e-Health record. These are the first of a range of guidance material on specific e-Health topics that will be developed by the OAIC.

The Consumers e-Health Alliance (CeHA) has brought to our attention a number of issues raised in these fact sheets. One of the main issues for concern relates to the registration process, which seems to mandate that each applicant create an ‘’ account, which will link to other nominated Australian Government agencies. There is also reference made to the ‘communication benefits’ for those creating an account, but not much explanation as to how the reverse access across Government entities might work. CeHA will query these issues and welcome any other issues of concern from consumers.

At the moment, the interest and powers of the OAIC seem restricted to privacy/security issues broadly, but do not appear to cover the actual implementation and ongoing operations of the PCEHR system. The PCEHR is at the early stages and there isn’t yet much meaningful information stored in the record, but it is still important to work through privacy concerns and ensure that sufficient safeguards are in place.  The PCEHR is an opt-in system, so it’s your choice to participate. However, this may not always be the case so it is worth considering any privacy issues that might be of concern to consumers as these records develop in the future.

We will let you know when the OAIC’s fact sheets are published, or other important privacy information regarding PCEHR is available – in the meantime you might like to check out the OAIC’s Privacy fact sheet 15: Ten tips for protecting the personal information in your eHealth record.

Kathryn Briant

Friday, February 15, 2013

ACT Health Directorate recognises the role of consumer representativse

The ACT Health Directorate held an event yesterday to thank consumer representatives for our contribution to improving the quality and safety of health services.
Adele Stevens speaking at the Consumer
Representatives  Thank you event at the
Canberra Hospital

Dr Peggy Brown, Director General of the Health Directorate, spoke about the vital role consumer representatives play and the unique perspective we bring to the health care system.

Dr Adele Stevens, HCCA Vice President and one our our experienced consumer representatives also shared her experiences at how consumers can contribute to  improving quality and safety of health care.

Dr Sue Andrews, HCCA President, also spoke and below is a copy of her speech.
I’m really pleased to be here today as HCCA President - and also a consumer representative – on this occasion to recognise and celebrate the very important core business of our organisation – the Consumer Representatives Program - and the people who contribute to its success here in the ACT – the consumer representatives themselves, all volunteers who bring a great deal of experience and wisdom to their role.
HCCA President, Sue Andrews

The HCCA is committed to responsive, informed and accountable consumer engagement and participation across the health system, including health service provision, policy development, services planning, and accreditation processes.

The external review of the CRP undertaken in August last year indicated just what a good job we are doing, and also provided valuable feedback on where improvements could be made. The Consumer Representatives Program was highly regarded by the majority of respondents to the survey and by the vast majority of people spoken to during the review. Both the stakeholders and the consumer representatives agreed that the CRP is having a positive role in the health system.

HCCA consistently delivers well above what we are funded to provide, and the demand for consumer representatives and community consultation continues to increase. Last year more than 60 active consumer representatives provided input into the work of over 100 committees. But consumer participation also encompasses much more than having representatives on committees. While this continues to be a very visible and effective method of engagement, we are also developing different models of consumer participation, and our role in the development of consumer and community consultation on health policy is also becoming an increasingly important part of our work.

I think it is also good to remind ourselves that we are all consumers of health services no matter what “hat” we wear in any particular moment in our work and community lives – whether it is as a patient, carer, support person or a parent. And our experiences of the health system are informed by our age, gender, sexuality, cultural or religious backgrounds, our different physical abilities or our emotional and mental health – or any combination of the above!

So with our shared knowledge and experience it is important that as consumers we continue to work together to ensure that genuine, effective consumer participation is part of a consumer centred health care system. Successful consumer representation benefits not only our organisation, but the ACT Government and the ACT community.

We look forward to another busy and positive year ahead.

Tuesday, February 5, 2013

ACT health infrastructure community information session

The ACT Government is spending over $1b to shore up Canberra's health system for the future, through infrastructure development and improvements in the delivery of care. 

HCCA has launched a new program which aims to ensure that the consumer voice is represented at all stages of this major restructure of the ACT's health system. As part of this commitment to consumer involvement, HCCA is holding an information session for interested community members.

If you'd like to know more about this large scale redevelopment of the ACT's health system, come along to a free information session. Refreshments will be provided so please RSVP and include any dietary requirements.

When:     Tuesday, 5 March 2013

Where:    ACT Sports House
                  100 Maitland Street
                   HACKETT ACT 2602

RSVP:      By Friday, 1 March 2013
                   By phone on 02 6230 7800
                   By email at

If you need any further information, please contact us by phone on 02 6230 7800 or by email at