The Push To Exploiting Health Information Seems To Be Building A Head Of Steam. It Is Not All Good News.

This appeared last week:

• Chanticleer
• Updated Oct 21 2016 at 8:58 AM

Top scientist wants to bring big data analysis to healthcare

by Tony Boyd

A day after winning the Prime Minister's Innovation Prize, Mike Aitken, was busy pressuring federal and state governments, health funds, hospitals and doctors to begin a mammoth big data exercise in healthcare.

Aitken, who is chief executive of the Capital Markets Co-operative Research Centre, says there is an opportunity to save up to $20 billion a year from leveraging the power of personal health data.

His urgent call for action is timed to coincide with the publication of the first of three reports by CMCRC on the multiple silos of data in the health system.

The first report is called Flying Blind – Australian consumers and digital health.
Aitken says it "chronicles the opportunity loss to Australia from a failure to integrate more than 50 sources of health data in Australia".

The report was sent to federal and state health ministers this week.

It concludes that Australia has high-quality healthcare data in digital form. This could support real-time personalised healthcare.

Too fragmented

But the fragmentation of the data from multiple sources means it is almost impossible to prepare consistent healthcare consumer identifiers.

Instead we have multiple health information coding systems and multiple points in the chain where consumers hand over the same data given to someone else in the system.

A symbol of the dysfunction is the sight of people carrying hard copies of medical documents and radiology images.

The report says administrative data collections contain incomplete filtered and filleted data that limit their usefulness for planning and managing the health system. The same weaknesses work against the efficient monitoring of the quality of health services.

Consumers are the biggest losers from the failure to centralise and share personal data.

Lots more here:

http://www.afr.com/brand/chanticleer/top-scientist-wants-to-bring-big-data-analysis-to-healthcare-20161020-gs6yzx

I thought it would be useful to have a look at the report.

Here is the link:

https://flyingblind.cmcrc.com/

Here is the Executive Summary:

EXECUTIVE SUMMARY

The Australian health system records sufficient high quality data in digital form to support consistent and targeted, real-time, personalised healthcare for each Australian. While, at a whole- of-population level, Australians enjoy high quality healthcare, our study shows that the acute level of data fragmentation creates an environment in which individual consumers, their next of kin and their service providers are flying partially or completely blind. The problem then extends to those charged with policy, resourcing, management and funding decisions in the public, private and non-government organisation (NGO) sectors, as well as health and medical researchers whose work is vital to the future health of consumers and the financial health of the country.

The fragmentation is the result of a number of key factors. Health services are delivered across a myriad of primary, secondary, hospital and allied healthcare settings, by a combination of private, public and  NGO providers,  many  of which  are  regarded as independent businesses. These are, in turn, funded and paid in many different ways and through different channels by consumers, state, territory and federal governments, and a wide range of insurers and related schemes. That each key player may use one  or more of a diversity of consumer identifiers and, in some cases, different health information coding schemes for their records, adds a lost in translation twist that further exacerbates effective use of data, even where this is brought together. Of equal significance are the multiplicity of state and federal laws and regulations that deal directly or indirectly with health data governance. While undoubtedly well intentioned, many present, or are interpreted as presenting,  significant,  and,  in some cases, insuperable  obstacles to rational combinations of health data. When viewing health as a market we have a clear case of market failure, a point   that is made directly and indirectly in recent submissions to the Productivity Commission’s inquiry into data availability and use.

The current situation does not result from a lack of goodwill or investment. Governments, universities and research bodies and service provider collectives (for example, doctors, hospitals, insurers) have made significant investments in improving health data collection and linkage over the past two decades.

However, these efforts have been largely focused around assembling fit-for-certain-purposes datasets that are generally de-identified, geographically bounded and do not contain complete health data even for the populations they are  seeking to study. Indeed, much cost and effort is often incurred in attempting to detour around the many barriers and data weaknesses that are described in more detail in our report.

In relation to consumer-centric health data initiatives, most effort has been directed towards what is now termed My Health Record. This initiative has been underway in various guises for almost two decades, but has yet to gain significant traction amongst consumers and health service providers.

Commentators have noted that tapping into complete, current and ‘fast flowing’ datasets of healthcare providers is an alternative model that delivers more comprehensive and ‘real-time’ benefits to consumers and their carers as well as providing the richest possible environment to support system planning and management, and  research.

We are effectively in the fifth decade of the digital era. Today, the power of data-and-evidence-driven product and service delivery   is taken for granted across many aspects of our lives. It is therefore ironic, that the most intrinsic and important aspect for each of us, namely our healthcare, remains such a significant outlier.

The perceived wisdom that continues to mitigate against joining up personal data to improve health is today significantly outof step with consumers increasing demand for instantaneous, personalised service delivery and their understanding of the social-contract necessary to achieve this. Generally, consumers have confidence that secure information processing regimes can deliver the benefits while mitigating the risks.

It is important to note that a range of other countries have tackled this situation boldly and have environments that leverage the power of health data for both preventive and curative healthcare.

This report is intended as an urgent call to action for the nation. While the notion of data may well be unexciting,    the power of complete, quality data to dramatically improve the fortunes of all health market stakeholders, particularly consumers, is assured. The knock-on benefits to burgeoning health budgets is an important by-product.

The time for piecemeal data initiatives is long since passed.   The nation must embrace an initiative that is truly transformative. This requires that we start from the perspective that data recorded at the point-of-service is the richest, most accurate and most current resource we have and that we should seek to capture once and use many times. It goes without saying that using state-of-the-art techniques to assure security and privacy are intrinsic to any solutions approach, but we must not let these issues deflect, hamper and ultimately defeat the initiative as has happened too often in the  past.

To succeed, such an initiative must be representative of key stakeholders, with consumers, clinicians and other health services providers determining the health outcomes required and policy makers, funders and researchers driving the what, when and how. Whilst acknowledging that government is a key stakeholder, this initiative should be driven as much by non-government stakeholders. The mission and funding of the initiative must be independent of electoral and government funding cycles. It must also be freed from the constant changes in stakeholder and management groups that are the characteristic of many national initiatives. We should adopt  an iterative, lightly engineered approach that will deliver immediate benefits and avoid costly mistakes and dead-ends.

At a detail level, we will need to adopt persistent identifiers  for consumers and providers, and consistent health information coding schemes as well as addressing legislative and  regulatory barriers that unnecessarily hamper consumer and community sanctioned collection and use of health data.

We are confident from our extensive interactions with stakeholders across the health market that there is broadly based support for such an initiative. As one stakeholder put it: “At the end of the day, our health is all we   have”.

----- End Executive Summary.

I have to say – having read this two or three times I am still wondering just what the group is really on about. The whole effort could really have benefited from some input from some e-Health experts who had some ‘on the ground’ experience. It is by no means clear to me just who is the intended target for the information etc. and just how issues of consent and privacy are to be addressed. I am also by no means convinced that the authors have a good feel for the complexity of health information and how deep the understanding of health data meaning is.

On a related topic I spotted this last week as well.

Can big data research lead to useful medical insights?

Antony Scholefield | 18 October, 2016 |

Many doctors have heard the phrase ‘big data’.

In fact, some might be tired of it already. There’s no perfect definition, but it usually describes huge datasets that reveal patterns of behaviour.

The Federal Department of Health has started to focus on using big data for medical research, and recently released a dataset based on anonymised Medicare data from 10% of patients.

It’s also working on a framework for secondary uses of MyHealth Record data, which will probably include using it for research.

But some UK and US researchers argue that big data will not lead to useful medical insights.

The rise of big data has come about because digital technology has made it easy to collect and store data.

One of the study authors, Dr Roger Highfield (PhD), director of external affairs for the Science Museum Group, UK, wrote an explanation of the paper for the website Wired.

He described big data research as being able to “take the ever expanding ocean of data [and] send a torrent of bits and bytes into a great hopper”.

“Then crank the handles of huge computers that run powerful statistical algorithms to discern patterns where science cannot.”

It’s the type of research that can tell doctors which demographics are more likely to be vaccinated, and who is more susceptible to developing kidney disease or catching a cold.

However, Dr Highfield and his co-authors warn that it’s the type of research that could also encourage people to incorrectly draw links between autism rates and vaccinations rates.

More here:

http://www.australiandoctor.com.au/news/latest-news/can-big-data-research-lead-to-useful-medical-insig

Good to see a healthy level of scepticism as to just what is possible and useful. Well worth a read:

Here is the full reference:

Philosophical Transactions of the Royal Society A 2016; online.

David.