e-health means participatory health: how social, mobile, wearable and ambient technologies are...
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E-health means participatory health:
How social, mobile, wearable and ambient
technologies are raising consumer expectations
and supporting new social movements
Kathleen Gray
16 April 2015
Eastern Disability Services Network
Technology and Social Media Forum
Maroondah Federation Estate, Ringwood.
Ehealth - makes me think of…
Telehealth incentives, pilots, rebates?
MyPHR, formerly known as PCEHR?
Australia’s infrastructure: NEHTA & AMT, DCM, HI, NASH, SNOMED-CT-AU?
Why e-health is so hard. Enrico Coiera. Med J Aust 2013; 198 (4): 178-179 ?
The World Health Organization’s ehealth strategy is now 10 years old…
Telehealth under Medicare – not the pink bits,
and at least 15km of road between patient & specialist
PCEHR – still more questions than answers
Pearce, C., & Bainbridge, M. (2014). A personally controlled electronic health record for Australia. JAMIA amiajnl-2013.
Ten things:
1. How is it different to what I have now?
2. What information will be included?
3. What is a Shared Health Summary?
4. Who can see my MBS & PBS details?
5. Why can’t I see my Pathology and Diagnostic Imaging reports?
6. How can I see info about my medications prescribed and dispensed?
7. Who can see my contact number and what is it for?
8. Who will see information entered via the Child Development function?
9. Can I remove documents?
10. What happens to the information if I stop using my eHealth record?
Dave deBronkart :
• a horror story of bungled medical records on a diagnosis of terminal illness; a happy ending in which he demanded a more active role in his care and saved his own life
• started a social movement of networked patients aiming to open up clinical care and clinical research
• http://e-patients.net
• http://participatorymedicine.org
A broader view of ehealth > the rise of the e-patient
Other heroes of participatory health include….
Internet => power to the people whose health it is…
Jan
2015
Technology enabled participatory health –
anyone can play, everyone wins, right?
Bornkessel’s networked model for patient centred care Curr Cardiol Rep 16:504, 2014
Disability
Many examples in today’s talk use the
language of health / disease broadly.
BUT
Technology-enabled participatory health
practices among individuals with
disabilities - and research into this area -
are widening…
Ellis, K., & Goggin, G. (2015). Disability media participation: Opportunities, obstacles and politics. Media
International Australia, Incorporating Culture & Policy, 154 :78-88.
Knight, E., Werstine, R. J., Rasmussen-Pennington, D. M., Fitzsimmons, D., & Petrella, R. J. (2015). Physical
Therapy 2.0: leveraging social media to engage patients in rehabilitation and health promotion. Physical
Therapy, 95(3), 389-396.
Zhao, Q., Tu, D., Xu, S., Shao, H., & Meng, Q. (2014, November). Natural human-robot interaction for elderly
and disabled healthcare application. In Bioinformatics and Biomedicine (BIBM), 2014 IEEE International
Conference on (pp. 39-44). IEEE.
Technology-enabled participatory health:
what does it look like in practice?
1. Smart search aids for health information
2. See a clinician 24/7
3. Open my clinicians’ notes about me
4. Shareable health decision-making tools
5. A patient portal to my health service
6. Personal health records that I control
7. Health apps on my mobile phone
8. Self-track using wearable devices and apps
9. Access a personal wellness dashboard
10. Swap health stories in peer-to-peer networks
11. Donate test results for crowdsourced research
12. Let sensors everywhere monitor everything about your health
13. Influence the design of health services & health research
+ a few things to think about before you try this at home….
Smart search aids
• 1 in 20 Google searches is health related.
• In 2015, when you ask Google about common health conditions, in some countries you’ll start getting relevant
medical facts right up front via its Knowledge Graph search algorithm (in partnership with the Mayo Clinic)
• For example, typical symptoms and treatments, as well as details on how common the condition is—whether
it’s critical, if it’s contagious, what ages it affects, and more.
• For some conditions you’ll also see high-quality illustrations from licensed medical illustrators.
• Basic info from Google may make it easier to do more research on the web, or know what to ask your doctor.
“The patient will see you now”
– an example of the new telehelath
“Gimme my damn data”
Doctors’ notes viewable by patients
US experience with doctors and patients sharing clinical notes BMJ 2015; 350: g7785 (10 February 2015)
“Nothing about me without me”
Decision-support tools for patients
• Studies show that patients have a higher level of satisfaction with the care received and decisions made.
• An A to Z Inventory of Patient Decision Aids, contains up-to-date and available decision aids that meet minimum medical criteria : https://decisionaid.ohri.ca/AZinvent.php
Patient portals
Viewing laboratory results = portal function commonly used by patients internationally
Most portals provide links to trusted consumer educational resources from all aspects of data (e.g.web links from each diagnosis or each laboratory test).
RNZGP Patient Portal Expert Advisory
Group. Dec 2014. Patient access … via patient portals.
• http://ithealthboard.health.nz/system/files/documents/pages/2014_rnzcgp_patient_portals_-_guidance_for_phos_and_general_practice.pdf
Consumer choice in personal health records
www.myphr.com/resources/choose.aspx
“Microsoft HealthVault is truly a wonderful service for long-term health management, and a PCMag Editors' Choice.
Its ability to import data from medical devices, health apps, and consumer health gadgets lets it do a lot of the heavy lifting in the background, without ever asking you to micromanage it.
I love that healthcare providers can email documents right into your account in a secure way.
And anyone managing a family's health needs will find it an excellent service for keeping track of all kinds of records.
Set up an account now, connect a few apps and devices that you use, and return to it every so often to update information that isn't automatically added.”
Duffy, J. Dec 19 2014 http://au.pcmag.com/personal-home-products/27026/review/microsoft-healthvault
Juniper Research 2013 said that by 2018 around the world there will be
100 million users of smartphone-based fitness and mhealth devices
18
Self-tracking: Why would you?
curiosity, performance, control, healing, socialising Gimpel, H., Nißen, M., & Görlitz, R. (2013). Quantifying the Quantified Self: A Study on the Motivations of Patients to Track Their Own Health. Proceedings of . ICIS 2013. AISEL
Image source: http://www.phonearena.com/news/Credit-Suisse-is-bullish-on-wearable-tech_id43206
Personal health data analytics and dashboards
New social movements
• The Quantified-Self movement was first developed in
Introduction
A public database of diagnostic reports
Citizen science is doing some interesting things to
research models
The Apple
ResearchKit
released this week
– makes it easy for
research to use the
tools built into your
iPhone / iWatch
– more data,
in more naturalistic
settings, than ever
before
“Now anyone with an
iPhone could
contribute to projects
such as Parkinson’s
disease research.”
Sensors are everywhere http://theconversation.com/is-googles-project-to-monitor-healthy-people-just-a-bit-creepy-29875
• Google's experimental Google X wing
‘Project Baseline Study’
• Aim: draw genetic and molecular data from
large numbers of people, to create a picture
of a person in perfect health, as a baseline
for [….].
• By using Google's computational power to
identify "biomarkers" in the data that could
help people stave off or avoid health issues
• Mid-2014 began harvesting anonymous
genetic and molecular information from 175
volunteers using wearable technology,
• Late 2014 announced a plan to use magnetic
nanoparticles to monitor for signs of cancer
and other diseases
• >Swallow a smart pill, call it to find out what it
‘saw’ , pool the data and look for patterns
• Owano, N. 31 January 2015
http://phys.org/news/2015-01-google-eyes-
nanoparticle-platform-health.html
http://ipnationblog.com
Sensors help with
home health
http://www.wordstream.com/blog/ws/2015/01/09/the-internet-of-things
http://www.forbes.com/sites/sap/2014/11/20/internet-of-things-how-will-it-work/ http://www.innovationiseverywhere.com/brics-series-4-picooc-internet-things-made-china/
http://www.slideshare.net/gdolin/connected-personalobjects-planningness2012
Bodine, C., Helal, S., Gu, T., & Mokhtari, M. (Eds.). (2015). Smart Homes and Health Telematics: 12th
International Conference, ICOST 2014, Denver, CO, USA, June 25-27, 2014, Revised Selected Papers
(Vol. 8456). Springer.
Technology enabled participatory health starts to
change the direction of health research
Healthcare services start to learn more, faster from
patients
JASON, MITRE Corp. November 2014. Data for individual health. Agency for Healthcare Research and Quality.
http://healthit.ahrq.gov/sites/default/files/docs/publication/2014-jason-data-for-individual-health.pdf
Health agencies,
planners, policy
makers
Changing health care and health research this way is a challenge for those who
manage health data and health information Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the
Participatory Biocitizen M. Swan, J. Pers. Med. 2012, 2, 93-118
Societal challenges too! “The use in research of personal fitness or health
data shared on social network raises both scientific and ethical concerns.”
Weigmann, K. (2014). Health research 2.0. EMBO reports, 15(3), 223-226
• “beyond contribution of genetic and phenotypic information, it is questionable that participants would truly be directing research. They did not have a say in the contours of the research or selection of the investigators who would conduct the studies. …The power to make all these decisions remained in the hands of the research sponsor (in this case, 23andMe and its partners). … it is unclear whether this
approach to genetic research is truly democratizing, or is simply an illusion of collective production.”
Koch, Valerie Gutmann. "PGTandMe: social networking-based genetic testing and the evolving research model." Health Matrix 22 (2012): 33.
• “no means of verifying the validity of data uploaded by users … impossible to verify whether users who have uploaded data are actually the sources of that data. This opens the venue to potentially malicious usage, as genotypings from strangers can be uploaded, as well as
misinformation about phenotypes can be entered. … users need to be aware of the potential of re-identification through providing metadata along with their genetic information and the genetic discrimination that could follow.”
Greshake, Bastian, et al. "openSNP–A Crowdsourced Web Resource for Personal Genomics." PloS one 9.3 (2014): e89204.
• “generally healthy people have internalised the notion of the ‘new public health’ and accepted the imperative of personal health responsibility. On the one hand, this bodes well for healthy individuals…. On the other hand, our findings may indicate that other factors,
such as social determinants of health, are ignored in health promotion efforts and that those who cannot manage their own health may fall further behind.”
MacGregor, J. C., & Wathen, C. N. (2014). 'My health is not a job': a qualitative exploration of personal health management and imperatives of the 'new public health'. BMC public health, 14(1), 726.
Who is ready for this?
E-health literacy, readiness, access and trust need more work.
Who needs to do this work?
• patients and clients in the healthcare systems
• members and clients of health consumer groups
• practising and future clinicians in all professions
• health service managers and IT managers
• health planners and policy-makers
• biomedical researchers and funders of health research, including taxpayers
Things to think about before you try this at home
Data creation – confidence in data, caution in interpretation
Data custodianship – who owns it? who cares?
Data curation – maintaining structures, applying standards
Data clouds – from connected information to collective intelligence?
Daly, A. (2015). The Law and Ethics of ‘Self Quantified‘ Health Information: An Australian Perspective. International Data Privacy
Law (2015, Forthcoming).
Kamel Boulos, M., Brewer, A., Karimkhani, C., Buller, D., & Dellavalle, R. (2014) Mobile medical and health apps: state of the art,
concerns, regulatory control and certification. Online Journal of Public Health nformatics,5.
http://ojphi.org/ojs/index.php/ojphi/article/view/4814
© Copyright The University of Melbourne 2015
Thank you!
Contacts / enquiries: health-informatics@unimelb.edu.au
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