Diabetes, PHRs,at teams - Hopkins Capstone

25
1 Capstone 5/1/07 Wade Schuet Capstone 5/1/07 Wade Schuet te te Can disadvantaged urban diabetes Can disadvantaged urban diabetes patients leverage the sharing of patients leverage the sharing of Personal Health Record data with Personal Health Record data with self-management support teams to self-management support teams to improve empowerment, access, and improve empowerment, access, and outcomes? outcomes? Capstone Presentation Capstone Presentation A Research Grant Proposal A Research Grant Proposal at the Johns Hopkins at the Johns Hopkins Bloomberg School of Public Health Bloomberg School of Public Health May 1, 2007 May 1, 2007 R. Wade Schuette R. Wade Schuette

description

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

Transcript of Diabetes, PHRs,at teams - Hopkins Capstone

Page 1: 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

Page 2: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 22

WadeWade

Page 3: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 33

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)

Page 4: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 44

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?

Page 5: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 55

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//

Page 6: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 66

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

Page 7: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 77

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”

Page 8: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 88

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

Page 9: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 99

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

Page 10: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1010

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

Page 11: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1111

How would success show upHow would success show up??

• Benefit at end

• Benefit at start

• Benefit is persistent

0

1

2

3

4

5

6

7

0 3 6 9 12

0

1

2

3

4

5

6

7

0 3 6 9 12

0

1

2

3

4

5

6

7

0 3 6 9 12

Page 12: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1212

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

Page 13: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1313

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)

Page 14: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1414

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

Page 15: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1515

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)

Page 16: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1616

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)

Page 17: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1717

• 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

Page 18: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1818

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))

Page 19: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 1919

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.

Page 20: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2020

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

Page 21: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2121

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

Page 22: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2222

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!

Page 23: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2323

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?

Page 24: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2424

This journey continues on my weblogThis journey continues on my weblog

Page 25: Diabetes, PHRs,at teams - Hopkins Capstone

Capstone 5/1/07 Wade SchuetteCapstone 5/1/07 Wade Schuette 2525

Questions?Questions?

• Thanks to

Anna Orlova, Ph.D.,

Capstone supervisor

• For more info, see http://newbricks.blogspot.com

or email• [email protected]