PHRs, Health 2.0 and the Impact of Social Media on Health Care
Diabetes, PHRs,at teams - Hopkins Capstone
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Transcript of Diabetes, PHRs,at teams - Hopkins Capstone
11Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette
Can disadvantaged urban diabetes patients Can disadvantaged urban diabetes patients leverage the sharing of Personal Health Record leverage the sharing of Personal Health Record
data with self-management support teams to data with self-management support teams to improve empowerment, access, and improve empowerment, access, and
outcomes?outcomes?
Capstone Presentation Capstone Presentation A Research Grant ProposalA Research Grant Proposal
at the Johns Hopkins at the Johns Hopkins Bloomberg School of Public HealthBloomberg School of Public Health
May 1, 2007May 1, 2007R. Wade SchuetteR. Wade Schuette
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WadeWade
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Diabetes is a major problemDiabetes is a major problem
• Cancer, cardiovascular disease, and diabetes…continue to exact an enormous medical and economic toll.
• The importance of maintaining a healthy lifestyle is underscored in Healthy People 2010, the prevention agenda for the United States. http://www.healthypeople.gov/
• In order to save the most lives from cancer, health care resources should be concentrated on helping people “stop smoking, maintain a healthy weight and diet, exercise regularly, keep alcohol consumption at low-to-moderate levels, and get screened…
•Source: National Institutes of Health (next page)
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NIH is seeking proposals (R21)NIH is seeking proposals (R21)http://grants.nih.gov/grants/guide/pa-files/PA-06-337.htmlhttp://grants.nih.gov/grants/guide/pa-files/PA-06-337.html
• Expiration/Closing Date: January 3, 2008
• The purpose … is to expand our knowledge of basic decision-making processes underlying initiation and long-term maintenance of healthy lifestyle behaviors
• New investigators, collaborations encouraged http://www.niaid.nih.gov/ncn/grants/plan/plan_i1.htm
• So, what would be both solid and innovative?
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Can we improve the Chronic Care Model?Can we improve the Chronic Care Model?http://http://www.ihi.org/IHI/Topics/ChronicConditionswww.ihi.org/IHI/Topics/ChronicConditions//
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First, computers have evolved since my First, computers have evolved since my uncle Roger’s day uncle Roger’s day http://www.sprintspecialoffers.comhttp://www.sprintspecialoffers.com
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Second, theories are changing…Second, theories are changing…
• Acute hospital care• Theory X • Authority• Expertise is the key• “Good patients” don’t
question orders• MD manages visits for
“treatment” for “a disease”, quarterly
• Chronic disease• Theory Y• Empowerment• Life-style is the key• Person manages their
“life” on many levels and many fronts, many times a day
• IOM’s “microsystems”
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Third, the personal health record (PHR) is Third, the personal health record (PHR) is already herealready here
• What is it?• HHS: http://www.ncvhs.hhs.gov/0602nhiirpt.pdf• MedicAlert
– http://www.medicalert.org/home/homegradient.aspx
• Desire for data (AHIMA)– http://www.myphr.com/faqs/index.asp
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But - When groups advocate the PHR, they But - When groups advocate the PHR, they may mean two very different things:may mean two very different things:
1) Incremental change --
with PHR, use the patient as data-entry clerk, to bring the context-less glucose data to “the mountain”, for periodic review,
or …
2) Disruptive & transformational change -- use PHR systems as an occasion to provide full management empowerment to the patient and give the patient control
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So, how can we exploit this?So, how can we exploit this?
• In the context of limited medical care– Use social networking tools to…– Give patients control of PHR– Give patients decision-support tools– Give patients a support team in their culture– Urge patients to “take control”– And provide start-up assistance
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How would success show upHow would success show up??
• Benefit at end
• Benefit at start
• Benefit is persistent
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Long-Term Effect of the Internet-BasedLong-Term Effect of the Internet-Based Glucose Monitoring Glucose Monitoring System on HbA1c Reduction and Glucose Stability, System on HbA1c Reduction and Glucose Stability, Diabetes CareDiabetes Care, vol. 29 no. 12, Dec. 2006, by Cho, vol. 29 no. 12, Dec. 2006, by Cho
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Impact of an Electronic Medical Record on Diabetes Quality Impact of an Electronic Medical Record on Diabetes Quality of Care, of Care, Annals of Family MedAnnals of Family Med., vol. 3, no. 4, July/August ., vol. 3, no. 4, July/August
2005 by O’Connor2005 by O’Connor
• 5-year longitudinal study of 122 adults at two clinics, one with EMR, one without
• EMR clinic did more tests, but both clinics had equivalent HbA1c and LDL at 2 & 4 years
• Conclusion:
• “If EMRs are to fulfill their promise as care improvement tools, improved implementation strategies and more sophisticated clinical decision support may be needed.”
• (emphasis added)
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So, a tentative proposalSo, a tentative proposal• New York City – Urban Family patients
– With at least weekly access to phone and web
• Newly diagnosed with type-2 diabetes• Create peer-support teams of 5 with similar
subcultures and language to work together, if nothing else to translate what the doctor said
• Each individual (and team) has a PHR• Teams try to control their composite score• Recorded conference call weekly for 3 months• Discussion is structured around 7 Q’s
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Proposed intervention Proposed intervention (continued)(continued)
• Discussion structured around 7 questions that touch each part of the feedback control loop
• (more on the next slide)
• Opportunity to chat after questions• Opportunity to use system for 9 months on own• Conference line calls them, not reverse• HIPAA requirements can be satisfied• (variant – add 2 recent grads as mentors)
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The cruxThe crux of the problem: “feedback of the problem: “feedback control loopcontrol loop” from ” from Control Systems Control Systems EngineeringEngineering textbook: textbook: Feedback Control of Dynamic SystemsFeedback Control of Dynamic Systems, 4, 4thth
edition, by Franklin, Powell, & Emami-Naeini (2002)edition, by Franklin, Powell, & Emami-Naeini (2002)
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• Familiar questions walk you around the universal wayfinding loop:• 1) What was our goal last week? 2) What was our plan? • 3) What outside events helped or hurt us last week? • 4) What actually happened? 5) So, did we reach our goal?• 6) What seemed to actually work best? • 7) Next week, what should we try? (Adjust goal and plan & repeat)
1
2 3
5
+4
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UsableUsable feedback is critical feedback is critical(SkyMark’s i-PathMaker line of team software – (SkyMark’s i-PathMaker line of team software – www.skymark.comwww.skymark.com))
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To close the circuit and make the lights To close the circuit and make the lights go on, we’ll need a “blue gozinta”go on, we’ll need a “blue gozinta”
• To have ‘control’ you must have a well-designed ‘controller’ (the blue box)
• No one has yet applied Control System Engineering principles and tools to this “self-control” problem. Let’s try that next.
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So the first-pass design is this:So the first-pass design is this:
• Controlled, randomized, non-blinded prospective study of 3-month team intervention added on top of regular care for this particular population
• Metrics:– HbA1c measures at 0,3,6,9,12 months– Michigan Empowerment survey on same schedule– Glucometer data (daily, regardless of study)– PHR access rate tracking
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Next stepsNext steps• Assess strength of logic so far (+/-)• Finding consultants from many fields• Finding PHR vendor / partner / donor• Study design – ecological validity• More “preliminary work” (“Before you begin…”)
– Deeper & wider literature review & data mining– Ask experts for advice – sanity check– Ask the patients if they use the web and, if so, how– Incorporate multiple focus groups’ feedback– Micro-pilot study, 1 team, 6 weeks, get kinks out
• Adjust and repeat the cycle
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Take home messagesTake home messages
• Better chronic care strategies are vital• PHR’s are here already• Social networking will continue to expand rapidly and
that opens up new interventions for us to try organized around teams instead of individuals
• Process control engineering already has a mature toolkit for analyzing feedback loops that’s worth checking out
• Compressing an interdisciplinary Research Plan into 15 pages in NIH format is really hard!
• Thomas Edison was right about success!
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Aside -- even without a PHR, there are now reliable, simple Aside -- even without a PHR, there are now reliable, simple tools for collaboration through blogs and cell-phones and tools for collaboration through blogs and cell-phones and
“social networking” – (“Power to the people” is here today)“social networking” – (“Power to the people” is here today)
• Example: http://www.37signals.com– are now free
– no IT-department required
– You don’t even need your own computer – no “footprint”
• A treasure-trove of easy and helpful tools for running your life:– Shared “to do” lists
– Automatic reminders e-mail
– Shared calendars
– Shared plans, tasks, milestones that actually are usable
– Messaging, live-chat, file-storage ( 3,000 meg for $60/mo, searchable)
– Your own “disaster preparedness” solution “in a box”
• If you’re nervous, why not take some friends and check it out together?
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This journey continues on my weblogThis journey continues on my weblog
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Questions?Questions?
• Thanks to
Anna Orlova, Ph.D.,
Capstone supervisor
• For more info, see http://newbricks.blogspot.com
or email• [email protected]