PCEHR-ConsentModel

PCEHR Consent Model I believe the model is opt in. I feel this is problematic as it will be very difficult to attain the critical mass required to make the thing useful, meamingful & not a waste of time.

Interestingly, my view is the reverse. The Con Ops document and briefings suggest newborn babies, for example, will be opted in by default and parents will have to opt them out if they don't consent to participation. It is not difficult to attain critical mass in a service that is useful to people (i.e. the Breast Cancer DB in the UK) and based on my reading of the ConOps, the IHI is of little to no use as a foundation at present. This doesn't instill a sense of confidence in one. Moreover, the government may store data bases of information about citizens. Regardless of how the information (such as discharge summaries, radiology and other clinical reports) is used in the context of the PCEHR, how will secondary uses of the data, such as research, be governed. Based on my reading of the ConOps, patient consent is irrelevant given the "elephant in the room"and consent models with regards to the PCEHR are a kind of distraction from key issues about who can actually have access to clinical information held in national databases. Juanita.

I found it interesting the New Zealand postion that the opt-out was important because of equity - those less likely to opt-in where those most likely to benefit. All the other arguments I had heard were about critical mass. Terry Hannan: with our work in Kenya with HIV/AIDS (initially the Kenyans were not even measuring the disease) we provided opt-in for HIV testing with low participation rates. Because of the importance for disease management, prevention and epidemilogy we institued opt-out as the alternative. We now have HIV testing rates of > 99%. Of course the social dynamics may be signficantly different however the system is now used in > 40 countries for all disease states.

In absolute agreement with the comments made above regarding the model needing to be ‘opt out’ rather than ‘opt in’. Apart from the ICT and health savvy health informaticians at one end of the spectrum and perhaps the civil libertarians at the other, the vast majority of health user will fall into the middle band. If users are given the choice, then we are likely to see the Victorian Myki ticket system scenario over again. The system works well, however because users were given a choice combined with unfavourable and negative media attention, then the majority of people just end up sticking with what they know or just never get around to applying to utilise the new system. Change management literature certainly points to the need to remove current / previous processes to order to be successful moving forward. In a complex health system where efficiencies and improved standards of care are going to be largely derived out of standardised processes, opt out models are going to provide for a far greater level of success. Andrew C

David M. The main point to remember here is that if there is a compelling or useful offering available people will adopt. If not they will stay away in droves. Kaiser Permanente's experience (high voluntary adoption, useful system) and the UK NHS experience (low adoption and a useless, slow offering) goes to show this is true.

Opt -in or Opt-out is a bit of a futile argument as you can't force use of a useless system or hold people back from a useful one!

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