The importance of data liquidity - PwC's report on transforming health through data

It's not the data, stupid; it's what you do with it. That's the value of investing in health information technology. The end-game is data liquidity.
Or, put more elegantly by Dr. Charles Kennedy of Wellpoint, "Taking data from a system – a piece of data from system A to system B – is very analogous to a transaction, and that’s really not where we need to go. Where we need to go is to repurpose raw clinical transactional data into an electronic understanding of the patient that easily and quickly allows doctors and patients to make ideal care management decisions.”
PricewaterhouseCoopers' report, Transforming healthcare through secondary use of health data, dives deeply into the opportunity of accessing, mining and analyzing data to best inform medical decisions and empower providers and patients.
This Holy Grail is clear; but so are the barriers and obstacles to getting there. Consider the list of issues to consider on this journey:
- Cooperation and connectivity -- including personal health management and wellness
- Technology -- such as interoperability and data architecture
- Quality and value -- both clinical and data quality
- Governance, standards and compliance -- "Standards" -- need I say more?
- Privacy and security -- the big enchilada, regarding access control and breach disclosure.
On this road, different stakeholder organizations will create new models along the way: for example, providers will improve disease, care and case management for patients managing chronic conditions; pharmaceutical manufacturers will better target treatment efficacy and streamline sales and marketing processes; and public health agencies can better anticipate epidemics.
Ultimately, empowering the patient is the focus of secondary use of health data. PwC rightly points out that the patient is actually the most vital collection source, living daily making decisions and taking actions that impact their health. This is known as observations of daily living and they need to be captured as a key data source in ongoing monitoring.
Health Populi's Hot Points: As Dr. Kennedy points out in the highlighted quote, the health industry en masse needs to shift the focus of data from transactions to quality and outcomes. This will require - surprise, surprise - incentives to, as PwC puts it, "induce all stakeholders to collect, report and use the data."
This is how we get to rewarding providers and suppliers for quality and value. But getting there is very heavy lifting. For example, according to a PwC survey, only 20% of providers have fully implemented computerized provider order entry, and 37% are in the pre-implementation stage. Going up the EHR complexity scale, only 15% of providers use clinical decision support, with 30% in the pre-implementation phase.
And the privacy issue is common concern among well over 80% of health stakeholders that PwC surveyed: privacy implications, public relations ramifications, and legal implications are several of the challenges that lawyers in these organizations are firmly focused on. This effort goes way beyond HIPAA: MedMining, one of the stakeholders that PwC focuses on in the report, says they have gone over and above HIPAA requirements to develop, "a belt, suspenders, Velcro and glue approach" to privacy and security of personal health information. They are focused on transparency and many Chinese Walls between the patient data and users of that data.
Read this report for a sober analysis of what stands between transactions and raw data, and the ultimate goal of using that information: clinical transformation that benefits people.
1 Comments:
Hi Jane,
Totally agree with the need for data liquidity as you describe. However I am convinced that you can't have data liquidity until you get a strong semantic handle on what the data actually is. So priority number one should be getting shared, standardised clinical content definitions. Just think - 7800 vendors in US and they all have different data structures for clinical content. So potentially 7800 different ways to represent a diagnosis - or maybe only 7500 'cos maybe a few shared definitions or created the same definition by accident. If every vendor used the same data definition/format/structure (whatever name you like) for diagnosis or blood pressure or medication, then they could actually start to share that health information without any additional data transformation. We would not only have data liquidity but it could be doing circus tricks and maybe even flowing uphill.
The key to data liquidity is actually in the semanics of the data itself. Look at some of the activity happening in the openEHR Foundation as an example which is making modest but significant progress. Their Clinical Knowledge Manager tool is coordinating an international effort to get clinicians/informaticians agreeing on clinical content definitions, known as archetypes - designed for dissemination, sharing and re-use across systems, between health domains and providers and across geographical and language borders. It is gaining traction in Europe, particulary in some national ehealth programs such as Sweden - where archetypes are the basis for the ISO13606 EHR standard.
Cheers
Heather (disclosure: Editor of openEHR Clinical Knowledge Manager)
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October 4, 2009 12:20 AM
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