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Diabetes, PHRs,at teams - Hopkins Capstone
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Diabetes, PHRs,at teams - Hopkins Capstone


This is my capstone project for my MPH at Johns Hopkins, 2008.

This is my capstone project for my MPH at Johns Hopkins, 2008.

Published in Health & Medicine
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  • Don’t understand DOCTOR, DEMMING
  • Close the loop and two things happen – statistics stop working, and the system starts working, there’s a whole new way to analyze such things that might be worth checking out. EXPLORE not ANALYZE., motor skils


  • 1. Can disadvantaged urban diabetes patients leverage the sharing of Personal Health Record data with self-management support teams to improve empowerment, access, and outcomes? Capstone Presentation A Research Grant Proposal at the Johns Hopkins Bloomberg School of Public Health May 1, 2007 R. Wade Schuette
  • 2. Wade
  • 3. Diabetes 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:// /
    • 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)
  • 4. NIH is seeking proposals (R21)
    • 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
    • So, what would be both solid and innovative?
  • 5. Can we improve the Chronic Care Model? http:// /
  • 6. First, computers have evolved since my uncle Roger’s day
  • 7. 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”
  • 8. Third, the personal health record (PHR) is already here
    • What is it?
    • HHS: http://
    • MedicAlert
    • Desire for data (AHIMA)
      • http://
  • 9. But - When groups advocate the PHR, they 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
  • 10. 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
  • 11. How would success show up ?
    • Benefit at end
    • Benefit at start
    • Benefit is persistent
  • 12. Long-Term Effect of the Internet-Based Glucose Monitoring System on HbA1c Reduction and Glucose Stability, Diabetes Care , vol. 29 no. 12, Dec. 2006, by Cho
  • 13. Impact of an Electronic Medical Record on Diabetes Quality of Care, Annals of Family Med ., vol. 3, no. 4, July/August 2005 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)
  • 14. So, 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
  • 15. Proposed intervention (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)
  • 16. The crux of the problem: “feedback control loop ” from Control Systems Engineering textbook: Feedback Control of Dynamic Systems , 4 th edition, by Franklin, Powell, & Emami-Naeini (2002)
  • 17.
    • 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
  • 18. Usable feedback is critical (SkyMark’s i-PathMaker line of team software – )
  • 19. To close the circuit and make the lights 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.
  • 20. 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
  • 21. Next 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
  • 22. Take 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!
  • 23. Aside -- even without a PHR, there are now reliable, simple tools for collaboration through blogs and cell-phones and “social networking” – (“Power to the people” is here today)
    • Example:
      • 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?
  • 24. This journey continues on my weblog
  • 25. Questions?
    • Thanks to
    • Anna Orlova, Ph.D.,
    • Capstone supervisor
    • For more info, see
    • or email
    • [email_address]