Every day, we create approximately 2.5 quintillionbytes of data, through a variety of mediums1. One ofthose mediums comes from our experience within thehealthcare industry domain. Each singular healthcareinteraction, such as visiting a pediatrician to getvaccinated, or a visit to the emergency room generatesheterogeneous data across different data domains. Thisdata could be about your diagnoses and treatments, oreven allergies you might have. Data are evenaccumulated across administrative and financial datadomains through public and private agencies.

Consequent to this mass creation of heterogeneous dataacross different healthcare domains, are ‘data silos’.This form of data accumulation is a highly chastisedresult which places severe limitations on healthcaredata. The data silos impede most simply put, sharing. Alack of interoperability stymies the potential flow ofhealthcare data for stakeholders, and perhaps mostimportantly – patients2.

An example of data silos and their varying healthcare domains.

A huge barrier to ventilating these data silos, is that ofexpectations surrounding healthcare data, namelyprivacy. How could any health-related organizationproceed with sharing information with such privacydemands; ultimately implicating any organization withintricate requirements with how to deal with their bigdata. The answer to this question, and those entangledwith ‘how can we share healthcare data’ stand to makethe resultant healthcare system more efficient, costeffective, and more human-centric3.References:1 http://www-01.ibm.com/software/data/bigdata/ 22 July 20162 Schneeweiss, S., 'Learning From Big Health Care Data’, New England Journal of Medicine, vol. 370, no. 23, 2014, pp. 2161-2163.3 Groves, P., Kayyali, B., Knott, D., & Van Kuiken, S., ‘The big data revolution in healthcare’, McKinsey Quarterly, vol. 2, 2013.

Changes to access, control, and ownership of healthcare data: towards a human-centric system.

Casandra GrundstromESR 10

This project has received funding from the European Union's Horizon 2020 research and innovation programme under theMarie Sklodowska-Curie grant agreement No 676201

Perhaps most comprehensible through the idiom‘cannot see the forest for the trees.’ My researchinvestigates a triumvirate of access, control, andownership in big data across healthcare domains. Theresultant findings will be used to propose changes andsubstantiated insight which plays a key role in helpingunderstand the bigger picture (the healthcare dataforest).

Field ResearchThrough a collaboration with LähiTapiola, a Finnishinsurance company, 2 main streams of research will beperformed.

SurveyA survey based on internal employee interviews will bedesigned and distributed to LähiTapiola customers. Thisquantitative approach will aim to glean insight intocustomer/patient oriented values and attitudes towardstheir healthcare data. With the ultimate goal of a metricinsight into human-centric wants and needs.

Comparative AnalysisAn attempt to establish an international collaborationwith another insurance company has been undertakenand is currently pending. Should agreements be madeand met, an ethnographic study will be conducted inboth organizations to ‘follow the healthcare data’ fromreport to conclusion. A comparative analysis will thenbe performed.

ConnectIf you find this research interesting or would like tolearn more, please contact me through email, or Twitter.

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@casandraCHESS casandra.grundstrom@oulu.fi