HISA and HIMAA have recommended health informatics and health information management expertise is present at all levels of governance within a proposed Australian Commission for Electronic Health (ACeH).
The skill sets, knowledge base and experience of health informatics and health information management professionals would be critical to the success of e-health initiatives, both organisations agreed.
HISA and HIMAA made the recommendation following the results of a digital health community survey which showed the majority of respondents supported the opt-out model and the proposed name change to My Health Record.
The federal government sought submissions to the “Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper” after a budget restoration of funding to the PCEHR. The paper recommended, among other initiatives, a change to the name of the system, disbanding NEHTA in favour of new governance arrangements, and a system move to an opt-out model.
HISA CEO Dr Louise Schaper said the views of more than 350 respondents to the joint survey provided valuable insights and tapped into the experience of the e-health ecosystem.
“Significant changes proposed, many from the Royle Review, were generally supported by respondents to the HISA and HIMAA Survey.
“However there were some interesting comments around whether healthcare provider organisations should continue to opt in or be allowed to opt out,” she said. “A bare majority of respondents (51%) agreed or strongly agreed to healthcare provider organisations and associated operators continuing to participate on an opt-in basis with over 20% being neutral to the proposition.
“Respondents who disagreed were of the view provider organisations should “opt-out as well”, “should be same as individual so opt-out only” and “participation should be mandatory”.
She said there was very strong agreement from respondents (over 90%) that the PCEHR rules be expanded to address how a healthcare provider would ensure data quality. A slightly smaller but still highly significant number (85%) were in agreement that security measures be expanded to all PCEHR participants.
Dr Schaper said health informatics professionals were well informed about the PCEHR and their view provided valuable insights.
HIMAA CEO Richard Lawrance said as with the joint HISA/HIMAA PCEHR Review survey in 2013, there was a wealth of volunteered comment that would yield much more qualitative detail should this be required.
“This has been the second collaboration between HISA and HIMAA, and recent discussions between the Presidents/Chairs of HIMAA and HISA indicated a firm commitment to more joint advocacy to come,” he said.
The survey showed strong agreement from respondents for the alignment of definitions between the HI Act and the PCEHR ACT and agreement to the encouragement of secure messaging and other forms of communication by ensuring that healthcare providers can be more easily identified e.g. by their email address.
One of the areas of strong agreement (over 95%) and NO disagreement from respondents was the proposition that a test environment be developed and implemented for use by vendors and other stakeholders.
A firm majority of respondents supported the following recommendations:
- Health informatics and health information management expertise to be present at all levels of governance within a proposed Australian Commission for Electronic Health (ACeH)
- The new name to be My Health Record
- An ‘opt-out participation model’
- Those who opt out retaining the right to opt in (and opt out again) at any time
- Individual right to monitor activity in their PCEHR, set access controls, notification when their PCEHR is accessed and complain in cases of privacy breach
- Expansion of the definition of “healthcare” in relevant legislation to include palliative care, health-related disabilities, aged care, and treatment of injury
- The consistent use of the terms “Individual” and “Healthcare Recipient” for consumers in PCEHR and HI Acts
- Expansion of the definition of heath information in both PCEHR and HI Acts to include mental or psychological health and individual’s disability
- Exclusion from the Acts’ definitions of “healthcare” activities performed for reasons other than care or treatment (eg. health insurance, life insurance)
- Use of mobile numbers, email addresses and IHI status as “identifying information” for “opt-out”
In summary, apart from two areas of strong disagreement on secondary use of information for research and related consent issues, and on the use of identifiers like drivers licence or passport number, respondents were generally in agreement with the majority of propositions.