Tuesday, September 15, 2009

What Is Really Motivating the New General Practice Data Governance Council?

The following release appeared a few days ago and an item on the release appeared in the Monday News here:

http://aushealthit.blogspot.com/2009/09/useful-and-interesting-health-it-news_13.html

General Practice Data Governance Council launches

10 September 2009

The peak general practice organisations have come together to form a new body to oversee the use of general practice data collected from participating practices.

General practice is a vital part of the health care system in Australia with 115 million GP consultations taking place annually. Computers are used by 98% of GPs for clinical purposes. The manner in which data is collected, stored and managed has to be agreed by the general practice community that has an understanding of the key drivers of privacy, confidentiality, safety, quality, ethics and accuracy. The use of this data for applications such as health service planning and research must be governed with respect and due diligence.

The first official meeting of The General Practice Data Governance Council was held on Friday, 28 August 2009, hosted by the Royal Australian College of General Practitioners (RACGP) and chaired by Dr Mukesh Haikerwal.

The meeting included representatives from the Australian Association of Practice Managers (AAPM), the Australian General Practice Network (AGPN), the Australian Medical Association (AMA), the Australian Practice Nurses Association (APNA) and the Rural Doctors Association Australia (RDAA). Council members identified and extended an invitation to the Australian College of Rural and Remote Medicine (ACRRM) and the Consumers Health Forum (CHF).

Dr Mukesh Haikerwal said the need for general practice to manage data generated as part of clinical practice is crucial and urgent. He was very pleased that the key general practice organisations were ready and willing to collaborate in this ground-breaking and vital work.

“There are many agencies that may want to access general practice data. We must ensure that this resource is used for the benefit of our patients and the quality of care they receive,” said Dr Haikerwal.

“Any collection of data in general practice needs to be mindful of patient privacy and confidentiality. We need to be assured of the security of practice data provided by GPs to other agencies. The medicolegal impacts of data sharing must be clarified. The General Practice Data Governance Council is committed to exploring these issues and developing profession led initiatives in these areas. This is a very exciting time for general practice,” said Dr Haikerwal.

The new group has been formed in response to the many data transfer activities currently planned or taking place in Australia , and the recent release of reports into health care reform from the National Health and Hospitals Reform Commission.

The General Practice Data Governance Council intends to work closely with The National E-Health Transition Authority Limited (NEHTA) and the Safety and Quality Commission on key e-health issues in general practice.

The media release is found here:

http://www.racgp.org.au/media2009/34119

The questions that occurred to me is why now and what might the stimulus be for setting this up, given we have had GP computer use at quite high levels for many years.

In passing I note that there is no indication as to how this Council is to be funded and just who is going to fund it.

I also note that, as yet, we have not seen any minutes or statement from the Council other than this release saying we had a meeting a couple of weeks ago and here is who came.

I also find it fascinating that the Government is yet to respond to the NHHRC Final Report – which talked about forcing GPs and others to provide information to Personalised Health Records and that out of the blue, chaired by a former NHHRC Commissioner, we have this group emerge.

It is also interesting that the Consumer Health Forum was added to the list of attendees as what must be a bit of an afterthought, or so it seems.

If pushed I would suggest this is a DoHA push as they realise if the sharing of GP records with the consumers is to ever become more than a gleam in the NHHRC’s eye that there is a lot of work to do to sort out the governance, sharing and quality issues around the information which is presently held in those systems.

The RACCP has worked with Pen Computing to develop and promote software that can assist with data quality and clinical audit and so, having an interest in the area, it is logical they convene such a group.

I find it astounding, by the way, that the Australian Privacy Foundation (www.privacy.org.au) does not have a seat at the table given we are apparently specifically talking about the sharing of clinical information.

We all really need to keep an eye on this group and they really need to be pretty open in their discussions for the good of e-Health as a whole. They certainly are likely to need both privacy and legal expertise as they move forward. They may also want input from the team working on patient record information security in IT-14 from Standards Australia. (see tomorrow’s blog for more information on that area).

I suspect it will be a good while before we have the governance structures in place to ensure we have clinical information that is auditably ‘fit to share’.

Were I a GP I would be very curious to know who is funding this – as that may very well reveal some plans that are presently not all that obvious and which may have an impact on the way I practice that is not entirely cost or work free.

Other theories are more than welcome!

David.

7 comments:

  1. What an interesting development. As far as I'm aware, GPs at the moment legally "own" their patient data - I wonder who might want to encrypt it so they can't actually touch the data without the encryption key...hmmm...also how this could be changed by administrative fiat as was done with the awarding of the UHI development contract to NEHTA by regulation without tendering prior to the last Federal election. There are many other possibilities...

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  2. Having watched the Pharmacy Guild commercialise GP clinical data, the RACGP is simply trying to get in on the act.

    As it stands, GPs give a lot of their data away to various groups for little or no commercial reward (Divisions / APCC / NPS etc). No doubt the college will set itself up as a conduit to aggregate and flog off GP data in an "acceptable" fashion, and frown on other parties looking to do same.

    PS - How many E-Health groups can Dr Haikerwal get involved in before his conflicts of interest outweigh his efforts?

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  3. Without doubt a welcome development. Let’s hope it is not just empty rhetoric.

    The doctors’ peak bodies have been fluffing around for far too long whilst the world keeps passing them by. Is this a sign they see their members becoming increasingly vulnerable as the government advances its reform agenda with the building of super clinics, providing access for nurses, pharmacists and other allied health professionals to the MBS and PBS? Is this a sign ‘the doctors’ are getting together to seriously address these developments, let us not refer to them as threats, because they are not that; there is much good in the government’s reforms but there is also much that can be bad if not well managed.

    The ones who stand to lose the most are the patients and their doctors if the fabric of our primary care system is dismantled in the name of reform to the point that the medical filter is shattered, that standards of quality, ethics, training, and co-ordinated care are dumbed down and fragmented too far. If that happens chaos will follow, more doctors will throw their hands up in horror and retire earlier than they might need to, the system will deteriorate further beyond repair and we will all be the worse off - patients, doctors, all health providers, and governments.

    Perhaps the RACGP has seen the writing on the wall and sent out the clarion call to its sister peak bodies to get together and try to do something positive and constructive, in the national interest, about influencing the way reforms are heading before it is too late. Let us hope so.

    As the name suggests - Governance Council for General Practice Data - it’s all about data; practice data and patient data.

    Fundamentally, in primary care most patient data originates from the practice as part of the patient-doctor consultation. Subsequently other data is built upon the primary source data as the patient moves around and through the health system being referred, being investigated, being treated by other health and allied health professionals.

    So essentially, if the RACGP and the AMA don’t address the vital issues of data governance it will be done for them by ‘others’ - bureaucrats, government, and other ‘peak’ bodies representing nursing, pharmacy and similar groups. It is therefore imperative to the future well being of our primary care system of health service delivery that the RACGP and the AMA take the initiative and muster whatever forces are needed to ‘fix’ once and for all every ‘key’ issue relating to the Governance of General Practice Data derived from all clinical and practice activities and events.

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  4. It’s very interesting to suggest that “the RACCP has worked with Pen Computing to develop and promote software that can assist with data quality and clinical audit and so, having an interest in the area, it is logical they convene such a group.”

    This raises the question, who controls the software? Is it PEN or is it the RACGP who presumably paid PEN to develop it? If the RACGP controls the software would they make it available to the Guild to distribute to its pharmacy members who presumably could equally well benefit from it in the interest of patient care? If PEN controls the software would they make it available to the Guild’s members if the RACGP asked them not to and at what cost to the RACGP?

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  5. If it was a DoHA push, as you say, wouldn’t you expect DoHA to have a seat at the table? Otherwise DOHA won’t know what is going on and how to steer events in the direction it might want them to go.

    Personally, I don’t think DoHA has anything to do with it and the further removed it is the better the chances of The General Practice Data Governance Council achieving some successful outcomes. By all means DOHA should be kept informed as is appropriate but not to the extent that it can be permitted to interfere and derail this important initiative. After the Governance Council has got well established and firmly underway then it is probably advisable to invite DoHA to provide some input.

    As for the Australian Privacy Foundation they have much to offer. Not including them may have been an oversight or it may have been something that was intended to be done a little later on. They should be involved and no doubt they will be in time.

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  6. I note you didn’t suggest NEHTA was, or should be, involved. Much better not to have it involved but to just let it get on with doing whatever it thinks it should be doing until it can demonstrate it has something useful to offer should that ever happen, regardless of the buckets of money being thrown at it. NEHTA is far too secretive an organisation and still lacking any independent representation on its Board to give one much confidence about what it stands for let alone its competence.

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  7. THis is not a DoHA push, but a recognition by peak GP organisations of the need to take control of the standards for use of GP data outside a practice. The secretariat for the GP Data Governance Council is funded by the RACGP while participating organisations fund their representation. There is much work to be done over the next few months, as outlined by your correspondents, and NeHTA will be a contributer to the technical standards for messaging. The RACGP's quality improvement initiative - Oxygen - is one activity that will conform to the protocols and procedures to be determined by the Data Governance Group. Oxygen will be launched at the RACGP's conference GP09 in Perth next week. One of the key roles for the Data Governance Group will be transparency - to ensure the monitoring of collections of GP data. How this will be done will be determined over coming months.

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