Support for PCEHR opt-out from HISA and HIMAA survey
The majority of respondents to a survey of industry views on the proposed changes to the PCEHR were in favour of the opt-out model and a name change to My Health Record, but there were significant areas of concern over secondary use of information, privacy and security.
The survey (PDF), organised by the Health Informatics Society of Australia (HISA) and the Health Information Management Association of Australia (HIMAA), was in response to the federal government's discussion paper on proposed changes to the legislation governing the PCEHR and the Healthcare Identifiers (HI) Service.
HISA CEO Louise Schaper said the views of more than 350 respondents to the joint survey provided valuable insights and that the significant changes proposed, many from the Royle review, were generally supported.
However, both Dr Schaper and HIMAA CEO Richard Lawrance urged that health informatics and health information management expertise be included at all levels of governance within the proposed Australian Commission for eHealth (ACeH), which the Royle review recommended should replace NEHTA.
The government announced in the May budget that it wants the new ACeH to take over operational control of the PCEHR from the Department of Health.
The organisations said that the skill sets, knowledge base and experience of health informatics and health information management professionals are critical to the success of eHealth initiatives.
While 77 per cent of respondents agreed with a move to an opt-out participation model, Dr Schaper said there were some interesting comments around whether healthcare provider organisations should continue to opt in or be allowed to opt out.
“A bare majority of respondents (51 per cent) agreed or strongly agreed to healthcare provider organisations and associated operators continuing to participate on an opt-in basis with over 20 per cent being neutral to the proposition,” she said.
“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 over 90 per cent of respondents that the PCEHR rules be expanded to address how a healthcare provider would ensure data quality. A further 85 per cent agreed that security measures be expanded to all PCEHR participants.
There was no disagreement from respondents about the proposition that a test environment be developed and implemented for use by vendors, and there was agreement about the need to encourage secure messaging and other forms of communication by ensuring that healthcare providers can be more easily identified.
In terms of secondary use of data, there was majority agreement of 64 per cent that individuals need to provide direct consent to a researcher (with ethics approval). There are lesser degrees of agreement (under 50 per cent) for "more control over de-identified information" and the ability to "opt-out of de-identified information for research purposes" of 49 per cent and 47 per cent respectively.
The opt-out mechanism for de-identified information also had a high level of disagreement of over 40 per cent. Several comments were that the question was an over-simplification of a complex issue.
On incentivising clinicians to upload documents through alignment with the MBS, 50 per cent agreed but others recommended caution.
In a separate submission, HIMAA wrote to urge the department to ensure that health information managers (HIMs) were involved at all levels of implementation.
Mr Lawrance wrote that the PCEHR needed an adequate classification system that supports searchability of data, and renders this meaningful as information for population health management and research, and for funding infrastructure.
“If the PCEHR is not functional as a health information management system, its impact upon the quality of care improvements expected of eHealth and in curtailing spiralling health care costs to the community will be severely impaired,” he said.
“To ensure success in the integrity of the record for the people of Australia, HIMs will need to be involved at all levels of implementation because integrity will rely on good documentation, right patient right record, privacy, consent, rules around systems and work flow required to get from the referral, preadmission, admission, discharge medication, discharge summary, back to the GP, specialist follow up, allied health follow up.
“Dropping all of these elements into an existing EMR and expanding this to the My Health Record requires the comprehensive combination of HIM competencies.”
Posted in Australian eHealth