erdley murray sini2008 presentation final

SINI2008 - 18th Annual Summer Institute in Nursing Informatics

Developing new models ofpersonal health records:

Health 2.0, Second Life and beyond

W. Scott Erdley, Peter J. Murray

• W. Scott Erdleyo Associate Professor, Wegmans School of Nursing, SJFCo Fellow, CHIRAD

• Peter J. Murrayo Founding Fellow, CHIRAD, UKo Vice President Strategic Planning Implementation, IMIA

Presenters


www.hi-blogs.info

Blogging SINI2008: http://www.differance-engine.net/krew


Content areas

• 'Traditional' and newer 'non-traditional' developments in the provision of personal health records

• What is 'Health 2.0'? What might it mean for the provision of (personal) health records?

• Second Life, Second Health, Web 3D: Some possible implications for interacting with personal health records


Diversity of Personal Health Record (PHR) ‘containers’

• Paper-based:o Brennan et al:

most common form users develop appropriate strategies for use (Moen & Brennan, 2005)

• Electronic (via PC, mobile device, Smart Card, etc.)o Users carryo Proprietary or non-proprietary systemo Example: Health Transaction Network

(http://www.healthtransactionnet.com/)

• On-line / net access (technology notwithstanding)o 3rd partyo 24/7 access


Some definitions & views of PHR

The (e-) personal health record (PHR) is:

• An Internet-based set of tools• Allows people to access and coordinate their lifelong health

information AND make appropriate components available to those who need it.

PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies . . .



• Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location.

• Family member, doctors or school nurses, can see portions of a PHR when necessary. Emergency room staff can retrieve vital information from it in a crisis.

• “People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access on-line self-help tools. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information.”

o [The Markle Foundation “Connecting for Health Initiative”, 2003; http://www.connectingforhealth.org/]



HIMSS defines an electronic Personal Health Record (ePHR) as:

• A universally accessible, layperson comprehensible, lifelong tool for managing relevant health information, promotion health maintenance and assisting with chronic disease management via an interactive, common data set of electronic health information and e-health tools.

• The ePHR is owned, managed and shared by the individual or his / her legal proxy(s) and must be secure to protect the privacy and confidentially of the health information it contains.

• It is not a legal record unless so defined and is subject to various legal limitations

• [http://www.himss.org/content/files/PHRDefinition071707.pdf]



AHIMA e-HIM Workgroup definition of PHR • The personal health record (PHR) is an electronic, lifelong

resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual.

• The PHR is maintained in a secure and private environment with the individual determining rights of access.

• The PHR does not replace the legal record of any provider.• The definition of PHR is still evolving in the healthcare

community.

[http://www.ahima.org/emerging_issues/PHR.asp#Definition]


PHRs provided by health care organizations

• UK's NHS Health Spaceo http://www.healthspace.nhs.uk/

• • Denmark's Health Portal

o http://www.sunhed.dk• • USA/AHIMA myPHR

o http://www.myphr.com• • MyHealtheVet

o http://www.myhealth.va.gov


New Players

• Google Healtho https://www.google.com/health/p/o “Google Health allows you to store & manage all of

your health information in one central place.”

• Microsoft HealthVaulto http://www.healthvault.com/o “A HealthVault account helps you collect, store and

share information with family members and gives you choice of applications and devices to help manage your fitness, diet and health.”


Some issues that arise on ePHR

Who defines it? - healthcare provider or patient/consumer? - or third party (eg GoogleHealth)?

Who controls it?

Who decides where it 'resides', how it can be accessed, who can access it?

Who owns the data?


But .....

Less than 3% of people maintain an ePHR.

"PHRs and electronic medical records remain an industry-driven vision, not a consumer-driven one — focused on efficiency and reducing costs. It seems we’ve lost sight of whether the consumer really desires and is willing to participate in these services.

What are the circumstances for using a PHR and do the benefits outweigh the perceived risks?"

Keith Schorsch - founder and CEO of Trusera.com, a social health Web site.


Some recent research


www.connectingforhealth.org/resources/ResearchBrief-200806.pdf


AUTHORIZATION

I hereby authorize Google to share the health information contained in my Google Health profile(s) in its entirety, to only those entities and individuals I designate, for the purpose of providing me with medical care and for the purpose of sharing my information with others that I choose.


PUBLIC HEALTH scenario

Google Health 2018:

Anonymized Google Health data is mined by Pleasantville public health officials to chart wellness patterns and develop health policy.

1. Everyone in town can log onto the Pleasantville Public Health Dashboard and measure their health status against the town averages.

2. Government commissions use the stats as the basis for regulating smoking, trans-fats, sugar and alcohol. Households with strong wellness metrics are eligible for tax rebates.

http://in3.org/articles/gh2018best.htmhttp://in3.org/articles/gh2018worst.htm


PERSONAL GENOMICS scenario

Google Health 2018:1. Curious Jean links her commercial DNA analysis to her Google account. The DNA service identifies risk factors in her Google profile. Her doctor uses the genetic data to derive the appropriate personal dose of her arthritis medication. When researchers identify a new genetic marker for a disease, she gets an email update if it's applicable.

2. The O'Halloran Family's genomic profile becomes the source of conflict when it turns out that several of the teenaged kids seem to come from different genetic backgrounds. Mom and dad have to explain which one is adopted, which is an IVF child from a donor egg, and which were from earlier marriages. In addition, the blood relations get told that they may be at higher than average risk for colon cancer. The family trip to Ireland is canceled.

http://in3.org/articles/gh2018best.htmhttp://in3.org/articles/gh2018worst.htm

Moving from healthcare provider to patient as the locus of control

• Whose health record is it?

• Who determines what can be in it?

• Who owns the data and what can be done with it?


What is Web 2.0?

Web 2.0, refers to a supposed secondgeneration of Internet-based services

emphasizing

on-line collaboration AND

sharing among users

SINI2008 - 18th Annual Summer Institute in Nursing InformaticsSINI2008 - 18th Annual Summer Institute in Nursing Informatics

Ref: An introduction to Web 2.0 (The user's voice in the second generationof the WWW) – Francisco Llaneras Estrada (Nov. 2006)

http://www.slideshare.net/kikollan/an-introduction-to-web-20-the-user-role/

What is Web 2.0?

• Improved communication & collaboration between people via social-networking technologies

• Improved communication between separate software applications (“mash-ups”) via open Web standards for describing and accessing data, and

• Improved Web interfaces mimicking real-time responsiveness of desktop applications within a browser window.

Ref: Social technologies (aka Web 2.0) for ehealth– Gunther Eysenbach (after Barreto) (March 2008)

www.webcitation.org/5W9GcYyWN


What is Health 2.0?

• Shreeve:o Health 2.0 is “all about Patient Empowered (not the misnomer

'Consumer Directed') Healthcareo whereby patients have the information they need to be able to

make rational healthcare decisions”, o and interoperability of health information will be a crucial

determinant of success or failure of the movement.

• O'Grady:

o the most important aspect of using Web 2.0 in health care is the use of social software, which will promote collaboration between patients, their caregivers, and health professionals.


How is Health 2.0 changing things?

Second Life – what is it?

• Second Life® is a 3-D virtual world created by its ‘Residents’

• 2003 – ‘opened’ to public• Current population: >10m Residents worldwide• Residents retain intellectual property rights in

their ‘digital’ creations.• Residents can buy, sell and trade with other

Residents.


Second Life – some health uses


Clinical applications in Second Life® include an innovative form of group and personal therapy that uses the online world as a safe training environment for patients with social anxiety disorders and with autistic spectrum disorders, including Asperger syndrome.

Patients can interact through their avatars in simulated social settings without fearing negative consequences in the real world. Clinicians are considering how virtual worlds and the avatar experience can be used as a counselling tool

http://www.nature.com/embor/journal/v9/n6/full/embor200886.html

Second Life – some health uses

SINI2008 - 18th Annual Summer Institute in Nursing InformaticsSINI2008 - 18th Annual Summer Institute in Nursing Informatics

Creation of 3D visualizations, simulations and 'virtual patients' that can be used to train medical students.

The Interactive Trauma Trainer (TruSim; Leamington Spa, UK).

Maged Kamel Boulos and colleagues have developed an 'AIDS-related Kaposi Sarcoma Experience' skin as part of their 'Sexual Health SIM' project - users, through their avatars, are able to see and experience how Kaposi sarcoma looks and feels to AIDS patients

http://www.nature.com/embor/journal/v9/n6/full/embor200886.html

Second Life – some possibilities

IBM's "vHealth" island in Second Life >>>

http://healthnex.typepad.com/web_log/2008/02/ibm-opens-new-3.html



Scienceroll (blog by Bertalan Mesko)

http://scienceroll.com/2007/06/17/top-10-virtual-medical-sites-in-second-life/Heart sounds (sim in a sim)



John Miller, Tacoma Community Collegehttp://jsvavoom.blogspot.com


Second Health

A Second Life experiment baed in UK NHS • http://secondhealth.wordpress.com/• http://www.youtube.com/watch?v=Mp8IyXZAv-U• http://www.youtube.com/watch?v=Hu-QNFLD1mg


Some thoughts on ‘health records’ in SL

• What will a ‘health record’ mean or look like?• Will your avatar be your PHR?• How will SL avatars interact with ‘First Life’?• Who will ‘regulate’ (if needed) health care and

information in SL?• What are the ethical responsibilities of nurse in

SL?


http://www.medicine20congress.com/


Acknowledgements:

thanks for materials, discussion and permissions to

Miguel Cabrer - www.mdpixxx.com

Bertalan Mesko - www.scienceroll.com

John Miller - jsvavoom.blogspot.com


Availability of updated presentation (and expanded 'webliography')

will be on the blog:

www.differance-engine.net/krew

[email protected]

[email protected]


Second Life

A patient/consumer lead example:

http://uk.youtube.com/watch?v=UV52WRXm1Cg


Webliography

Some online resources you may find useful:

Second Health - http://secondhealth.wordpress.com/

Health & Medicine in Second Life - http://healthinfoisland.blogspot.com/

SLHealthy - http://slhealthy.wetpaint.com

IBM's "vHealth" island in Second Lifehttp://healthnex.typepad.com/web_log/2008/02/ibm-opens-new-3.html

John Miller's blog (nursing faculty, Tacoma Community College WA) http://jsvavoom.blogspot.com/

Webliography


http://uk.youtube.com/watch?v=UV52WRXm1Cg

http://uk.youtube.com/watch?v=wD4dRTR1nVI

http://uk.youtube.com/watch?v=FKL3GZUDudghttp://uk.youtube.com/watch?v=U3Szet7MJEM

http://uk.youtube.com/watch?v=Hu-QNFLD1mghttp://uk.youtube.com/watch?v=DDTJJAwf6A4&feature=relatedhttp://uk.youtube.com/watch?v=Mp8IyXZAv-Uhttp://uk.youtube.com/watch?v=v9wOJZwzqJI


Webliography


http://www.thehealthcareblog.com/the_health_care_blog/2007/10/a-broad-vision-.htmlhttp://wordpress.com/tag/personal-health-record/http://web2097.blogspot.com/http://keyose.com (Spanish-based PHR system)http://connectingforhealth.org/resources/ResearchBrief-200806.pdfhttp://www.nuffieldtrust.org.uk/ecomm/files/Elec%20Personal%20Records%20II.pdfhttp://www.connectingforhealth.nhs.uk/newsroom/worldview/protti7http://www.ihealthrecord.org/register.htmlhttp://www.myphr.com/https://myhealthfolders.com/http://mivitals.com (PHR)


erdley murray sini2008 presentation final

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