Diabetes, PHRs,at teams - Hopkins Capstone

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

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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
  • Diabetes, PHRs,at teams - Hopkins Capstone

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

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