System Reform Needs Data

 

There are lots of data available in the operations of public service systems but precious little is converted to useful knowledge.

Despite the wealth of information flowing through publically funded health care sectors for example, auditable patient health status tracking or routinely operating quality measurement processes are atypical outside time-and site limited studies and pilot projects. A myriad of these individual studies and pilot programs are conducted, but nothing at sufficient scale to produce measurable system effects. Attempts are made to aggregate through meta-analyses or compilations by specific technology (e.g. electronic health records; computerized order entry, computerized decision support). However, the limitations of the individual studies force general conclusions that e-health (data production and mining) benefits have not been empirically demonstrated [1]. The pattern is repeated and noted across the world [2-4]. It is often cast as a knowledge-translation or evidence acceptability problem, but in fact, this pattern is evidence of system-level resistance to change. We just don't collect the data that we need and we don't utilize the data that we have [5].

Canada has one of the best collections of health sector data anywhere in the world. Over many decades each of the Canadian provinces has collected electronic data on many health system transactions including hospital admissions, physician visits, prescriptions filled. A significant portion of this throughput data can be linked to individual patients making patient health status trajectories available for analysis. This data could inform return on investment (ROI) analysis of single or cumulative public service factors and interventions. Other than the occasional one-off research study, this integration is not done; the data is not available; the policy and system reform questions are not asked.

An even simpler example is the electronic data from the Picture Archival Communication Systems (PACS) systems routinely maintained by providers of radiological equipment. Each imaging study from an X-ray to an MRI contains a header identifying the patient, the ordering clinician, the radiologist doing the reading and the reported result. In Canada each province has compiled these PACS records into centralized repositories of all the diagnostic imaging performed in the jurisdiction. None of this information is mined for ROI or error rate determination or any other system improvement information.

Individual privacy rights are the commonly cited reason that these data languish. Patient health information regulations and information management processes set up during the paper-record era must be re-examined. Information privacy at the extreme results in inaccessible information silos with no integration possibility, no comparability, no monitoring and no error anticipation or correction. Modern electronic data security standards and good management can protect sensitive information better than paper files.

The routine compilation, linkage and monitoring of the full data stream is necessary in order to build optimal care pathways and test quality innovations. Data of this complexity with individual identifiers removed would provide details of the full patient experience in real time as well as what processes/ treatments work, where, when and for how much. That level of information made widely available on a regular basis would provide leaders the direction and the support necessary for significant health care reform.  Access to that information is also necessary for public support of the necessary changes.


1. Black, A.D.; Car, J.; Pagliari, C.; Anandan, C.; Cresswell, K.; Bokun, T.; McKinstry, B.; Procter, R.; Majeed, A.; Sheikh, A. The Impact of eHealth on the Quality and Safety of Health Care: A Systematic Overview. PLoS Med 2011, 8: e1000387. doi:10.1371/journal.pmed.1000387 .
2. Lyons, R. Using Evidence: Advances and Debates in Bridging Health Research and Action. Proceedings of the Symposium on Health and Knowledge Translation (KT), 13 Norham Gardens, Green Templeton College, University of Oxford, Oxford, UK. Available on-line: http://bit.ly/lgj4Wa
3. Lavis, J.N.; Wilson, M.G.; Grimshaw, J.M.; Haynes, R.B.; Hanna, S.; Raina, P.; Gruen, R.; Ouimet, M. Effects of an Evidence Service on Health-System Policy Makers' Use of Research Evidence: a Protocol For A Randomised Controlled Trial. Implement. Sci. 2011, 6, 51. doi:10.1186/1748-5908-6-51 Available on-line: http://www.implementationscience.com/content/6/1/51
4. Gluckman, P/ Towards Better Use of Evidence in Policy Formation: A Discussion Paper, Office Of The Prime Minister's Science Advisory Committee, Auckland, New Zealand, 2011. Available online: http://bit.ly/mu3fbV
5. Wolfson, M. Health Care is a Knowledge Industry, and Should Be More So. New Directions for Government in Canada. Centre for the Study of Living Standards, Ottawa, Canada, 2011.

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