Personal Health Records and patient-oriented infrastructures Talk at University of Trento - December 2011

1. From PHR to NHR? An UCD challenge
Giampaolo Armellin, Dario Betti, Stefano Bussolon,
Annamaria Chiasera, Manuela Corradi, Jovan Stevovic
Personal Health Records and patient-oriented infrastructures

2. Declaratio terminorum (1)
2
Dictionary by By jwyg on http://www.flickr.com/photos/jwyg/3745559121/

3. Declaratio terminorum (2)
3
Personal Health Records vs. Electronic Medicals
vs. Electronic Health Records
Dictionary by By jwyg on http://www.flickr.com/photos/jwyg/3745559121/

4. Infrastructures for interoperability
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Regional/national/international-wide infrastructures
to enable data exchange and sharing among EMRs and EHRs.

5. Beyond the boundaries
5
putting into action eHealth interoperability
Border-USA-Mexico by By `David on http://www.flickr.com/photos/david_ludwig/386317095/

6. What's about PHRs?
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Can we name them NHRs (Networked Health Records)?
Could be NHR the european way to UHRs (Universal Health Records)?
Border-USA-Mexico by By `David on http://www.flickr.com/photos/david_ludwig/386317095/
authorizes such sharing.
There are several possible approaches to creating a functional
PHR (Fig. 1).3
In the first approach, an individual may create
his or her PHR using commercially available applications,
ranging from stand-alone systems to Web-based applications.
The patient can enter and access his or her health data through
such systems. In its simplest form, the PHR is a stand-alone ap-
plication that does not connect with any other system. At the
other end of the spectrum, PHR functionality can be provided
by allowing patients to view their own health information that
is stored in their health care provider’s EHR. The EHR-based
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F i g u r e 1 . Range of complexity in various approaches to
personal health records (PHRs).from: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc.2006

7. At least two big issues
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- the semantic gap on the data flowing from EMRs and EHRs into NHRs
- the privacy control on the data flowing from PHRs into NHRs
Flow by By Yogendra174 on http://www.flickr.com/photos/yogendra174/5980718184

8. 8
How to address?
It is necessary to involve the citizens- patients in designing the modalities in
which their PHRs merge in the NHRs.

9. The semantic gap
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“Both terminology and data presentation must be adapted
to the individual using the PHR, so that they realize optimal benefits". (Tang et al., 2006)
The New York Times on the New Art of Flick by By Thomas Hawk on http://www.flickr.com/photos/thomashawk/2442371176/

10. The semantic gap: the terminology issue/1
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Many relevant works have been done on the problem of the linguistic gap between
consumer-oriented vocabularies and specialized medical terminologies
(Soergel et al., 2004, Zeng et al. 2006, Rosembloom et al., Keselman et al., 2007) by
machine-automated analysis and mapping.

11. The semantic gap: the terminology issue/2
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The hybrid approach: machine-automated tools
plus the direct involvement of lay people (Cardillo et al., 2009, 2010)

12. The semantic gap: the data presentation issue/1
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To avoid information overload,
patients need individualized view on their health data. (Knaup␣et al., 2007)

13. The semantic gap: the data presentation issue/2
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Which data are relevant to patients?
How to organize them?

14. The semantic gap: the Trentino case study
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Event oriented architecture (EDA) is an architectural pattern widely used in the design
of the interoperability infrastructures in the healthcare domain
(National Institutes of Health, 2006).

15. The semantic gap: the Trentino case study
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16. The semantic gap: beyond linguistic mapping
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yellow crowd by twose on http://www.flickr.com/photos/twose/887903401/
Which events are relevant to patients?
Which data should these events delivery to PHRs?

17. The privacy control
17
Safe by rpongsaj on http://www.flickr.com/photos/pong/288491653/

18. Different privacy regulations
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Safe by rpongsaj on http://www.flickr.com/photos/pong/288491653/
The patient under European Data Protection Directives
The data producers under HIPAA
Who is the data owner?

19. Our previous work: data filtering rules
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A purpose-based access control with sub-document level granularity
To specify which documents and which parts can be used for which purposes
To allow organizations to gain complete control over data sharing

20. Data filtering rules: the policy definition GUI
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Allow users and organizations to specify which documents
and its parts can be accessed for which purposes

21. Different regulations
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Which are the patient rights under each different regulation?

22. Patient vs. Organization produced data
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How to provide GUIs that allow flexible policy definition?
Patients have different rights on different records

23. Crossing country boundaries
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How to share data across organizations belonging to different regulations?
US-EU Safe Harbor privacy principle
By DeusXFloridam on http://farm3.staticflickr.com/2430/3976943870_8f3a033bd0_b.jpg

24. Lessons learned
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Crucial role of citizens/patients to successfully create an NHR:
beyond linguistic mapping, towards process mapping
Methodology for tight and incremental control on the access and dissemination of
sensitive information
A purpose-based access control mechanism that is suitable for data sharing in health care

25. Future work
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On-field experimentation of UCD techniques in a real example of evolution of a PHR in NHR
for an empirical evaluation of the effectiveness of the patients involvement
Analysis of different regulations and requirements
Design flexible user interfaces to satisfy mentioned problems

26. Questions?
{garmellin, dbetti, achiasera, mcorradi, jstevovic}@cr-gpi.it
stefano.bussolon@unitn.it
Thanks!