Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Wednesday, November 01, 2017

Interesting The Things That Go On Largely Under Radar. Not Sure This Is An Optimal Approach?

This appeared last week.

How big data is shaping the future of general practice

25 October 2017


The GPs at Dr Malcolm Clark’s group practice in suburban Melbourne felt confident in their management of diabetic patients. Then they received a data report that got them thinking.
“When we got the data back we could see this smaller group that we could do a better job with,” Dr Clark says. “We were able to identify patients who were good at dealing with their diabetes and those who were not.”
The data in question was in the form of a report produced by MedicineInsight, a data collection, storage and analysis platform provided by NPS MedicineWise (see How it works).
 Dr Clark’s practice is among 600 around the country that share patient consultation data with the network and receive feedback reports.
 In return, MedicineInsight stores the de-identified data for use by third-party researchers.
Dr Clark, a member of the MedicineInsight data governance committee, was among the first to join his practice up to the program.
He says the benefit of using the NPS MedicineWise tool over other practice software is the ability to look at trends in a meaningful way.
“It is good to be able to look at a group of patients and see how we can do better for them,” he says.
“General practice in Australia is funded like an emergency department but over the last 25 years chronic disease management has become  a big part of what we do.
“We are so much better at looking after those sorts of problems but GPs still treat a chronic disease like someone coming in with a cough or cold or a broken arm.
“They don’t get paid to sit around and look at the population group.”
With no fees and minimal additional paperwork, it sounds like a deal too good to be true for practices looking for a measure of performance and ways to improve patient care.
In August last year, however, the CEO of NPS MedicineWise, Dr Lynn Weekes (PhD), was forced to defend accusations that the organisation had sold out to Big Pharma after it was revealed that VentureWise, a commercial subsidiary of MedicineInsight, had  sold access to data to the pharmaceutical company Gilead Sciences.
 In an open letter published on the organisation’s website, Dr Weekes confirmed that two projects to date had received industry funding. These included a grant from GSK for a GP education program on inhaler devices and usage, and a research project funded by Gilead assessing the primary care management of renal toxicity associated with its HIV combination drug Stribild.
Professor Nigel Stocks, from the discipline of general practice at the University of Adelaide, chairs  the MedicineInsight data governance committee, which comprises  GPs and academic researchers, and says the projects were subject to the scrutiny of the committee.
“We are cautious about pharmaceutical companies applying to use the data,” Professor Stocks says. “The key things we consider are that the research question has to be for the public good, and the company has to go through a third party to analyse the data.”
On the question of how the data is used, Dr Clark says he understands the community suspicion surrounding relationships with industry.
“The role of the committee is to ensure that something doesn’t happen to cause reputational damage to NPS,” he says.
 “If you are collecting data on someone’s behalf and you are clear that the data will be used for not-for-profit stuff like academic research, then the altruism of giving data to NPS is understood. If, however, the data is being bought by a third party for profit you have to be crystal clear with the practices.”
Professor Stocks says the committee has rejected many applications, either because of  concerns over identification of the practices involved or because the data is in danger of misinterpretation.
“Any application to access the data needs a well-defined research question,” he says. “We have asked a number of applicants to better define their research question and we give them advice in terms of the difficulties they may have in utilising the data.”
For example, he says, in the consultation records it is not always clear what an antibiotic was prescribed for, or what a patient may have been allergic to, as GPs  use different labels for the same illness.
“Until we understand the variations in the labelling of the illness we have to be cautious of the interpretation that people apply to the results. We are very aware of data quality issues, it is far from perfect but it will improve over time.”
But not everyone is convinced the data from MedicineInsight is useful for the practices involved or for third parties that wish to access it.
Lots more here:
I wondered about consent and here is what I found:
“Practices are required to display information in the waiting room informing patients that data is being collected. The onus is on the patient to opt-out by requesting that their data not be shared.”
 I also looked in the articles for a mention of ethics committee approval. There was none.
Given the issues with data security and anonymization I really wonder just how well conducted all this is and why none of it has yet been published if the info is so valuable.
I think all these studies should really be ethics approved and deliberate conscious opt-in!

1 comment:

Terry Hannan said...

David, your comments are perceptive and important and as you state there are many more issues about this management of clincial data. Is the ‘display on the collection and use of data’ INFORMED? Terry