The PCEHR belongs to Australians, not the government. It is our tax money, our data, our health, our work. NEHTA and the Department of Health have not been able to manage the project successfully over the past years and the governance of the PCEHR should be handed over to an independent council as soon as possible.
The resignation of NEHTA’s top National Clinical Leads in August 2013 was the final straw. I have said it before and I will say it again: if clinicians are not on board the PCEHR will fail. There are some big decisions to make by the relevant authorities if they want to save the project, and making these decisions without clinical advice is impossible.
The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.
What we need is an open, well-informed discussion about the purposes of the PCEHR. What are consumers and clinicians exactly saying yes to when they sign up?
Consumers must know exactly what happens with their data after they have visited the doctor or the hospital. We need to agree on secondary use of the data and informed consent by clinicians and consumers is a basic requirement here. The PCEHR Act 2012 and the participation contract should both be reviewed and made 100% acceptable to consumers and clinicians.
But most of all we need real stakeholder engagement. An independent governance council must be created, consisting of health professionals, consumers and industry.
This is a big job but certainly not impossible. Let’s hope common sense prevails.