s38: project healthdesign round 1-lessons and models

8/9/2019 S38: Project HealthDesign Round 1-Lessons and Models

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Kevin B. Johnson (Vanderbilt)Steve Ross (U. Colorado Denver)

Lisa Nugent (Johnson & Johnson)


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We need to go from this

Project HealthDesign: Mission


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To this!

Project HealthDesign: Mission


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Project HealthDesign $9.5 Million National Program

Created in 2006

Funded by the Robert Wood JohnsonFoundation Through its Pioneer Portfolio

National Program Office: University of Wisconsin - Madison School of Nursing

Project HealthDesign: About the Project


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Common PlatformA common technology platform

for PHR applications:

Accelerates development

Increases interoperability

Improves security

Can support a variety of personal healthapplication tools

Reduces implementation time

Project HealthDesign: What Weve Learned


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Users ethical, legal, and socialconcerns about sharing PHR

information are real, butsurmountable

Top three concerns:

Control over access to information

Managing privacy rights

Shifting shared decision-making tothe patient

Project HealthDesign: What Weve Learned


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http://www.projecthealthdesign.org/overview-phr/projects/190928


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Age(yrs)

completed / enrolled (%)

Avg #meds

Comments

7 3/3 (100%) 7 Child did well with pager, took to school and was very helpful with bolus feeding reminders. Parent was surprised.Child kept up with pages and med, was intermittent about reporting pages to parent. Child was in and out of parentshome who completed surveys.Everything was OK with me. I liked it. She wore it except I didnt let her take it outside--didnt want to have her lose it.One time alert went off while she was sleeping and scared her; became reluctant to keep pager at bedside.Lost interest at first because didnt get any pages for a couple of days. Found really helpful to remember enzymes whenaway from home but child is generally disinterested in keeping up with meds.

8 5/6 (83%) 7 DisinterestedStopped on Saturday. She said she did not want to do it any more when she went to her cousins house.Child was engaged and reported all pages.

What helped was Cephalexin not in daily routine. Daily routine didnt really need. Very helpful for added doses. Would begreat for outside school.Child was hospitalized when first enrolled, so study time was extended. Child kept up with pager and experienced somedifficulty in reading pages but would bring to parent to get help. Parent happy with childs ability to keep up with pager.At first was reporting pages but had trouble keeping up with pager. During week 3, child put pager away and stated shedid not want to carry it anymore.Got embarrassed first day or two of wearing pager at school.Parent was really surprised child kept up with pager, lost it once but found it. Was good about reading pages but did notreport them always to parent.Left at school one night because put in desk and forgot. Child loved responsibility of pager, did not always report toparent, but kept up with pages and meds.

9 4/4 (100%) 7 Parent wasnt sure how interested the child was in the pager, but he did report getting pages and carried the pagerChild was engaged and enthusiastic about pager and remembering meds. This child is generally cooperative about meds.It really helped her a lot to remember during school. Bolus feeding lose track of time, teacher and child. Really helped herand teacher to remember. When she got a message remembered to take medicine (surprised me.)

10 2/3(66%) 5 Does not like it, sees it as a nuisance-dropped out during week one. Teacher and med system very efficient at school,child did not see a reason to continue. Doesnt like carrying it. Doesnt like friends asking her about it.I think it has helped him grow up some. At Christmas he had several comments about how he has grown up. Noproblems with the pager. No surprisesChild is diligent, kept up with meds and pager. Pager went off a couple of times when child was sleeping

Parents surprised by childs ability to use pager Children kept up with pager if they found it

valuable

Not all children needed reminders after a while


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This is a missed dose. Red dots areearly, Green dots are on time doses


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Is this interface sufficient to conveyinformation needed for decision support?Should patients be able to filter data beforepublishing?How do we combine these automaticallygenerated items with annotations?

Will prescribers or nurses want to review this?


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LIVING PROFILESProject HealthDesign funded by RWJF

personal health records

for teenagers


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LIVING PROFILESA collaboration between designers, healthcare

providers, and patientsArt Center College of Design (through May 2008)Childrens Hospital of Orange County

Stanford University


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As teens with chronic healthproblems transition from

pediatric care to adult medicine,they face a number of

challenges that can impact theirphysical and emotional health.


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We knew teenagers would be adifficult population to reach.

We wanted to discover: what would engage them

what they felt was meaningful how to sustain their interest


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32 patients volunteered

14- to 18-years-old

CHOCs Hematology Clinic

10 males and 6 females

Stanford Pediatric Rheumatology

11 females and 5 males

We conducted in-home interviews andengaged teens in probe activities.


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Cultural probesRanging from highly directed to very interpretative

activities, 8 unique probes were distributed tosolicit responses that are difficult or impossible toobtain in an interview or clinical setting.


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We discovered disconnections and designopportunities

Teen patients consistently define theirquality of life through engagement with theirsocial networks and mood not by illness.


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Teens greatly respect and admire theirparents (albeit not while in clinic).

She helps mewith stuff I cant do

and shows me

new stuff I didnt knowabout

Hes a good friend whocares about me

Should we be thinking about

transition is a new way?3 in 4 think their parents understand the problems and

situations they face as teens very or somewhat well.Teens & Parents USA WEEKEND Survey Results


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Teens define and chart their future withoutreferencing their condition .

Wheres the kidney transplant?

The hospitalizations? The pills?


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The definition of private is changing inthe networked world.

Q: So youve set [your Myspace page] for Private.

Irene: Yes.

Q: So how many friends are in your private circle?

Irene: I have 50 friends.

Q: Out of your 50 friends and family how many are active?

Irene: the majority of them are active. But not all are close People

that I am kind of close to, but not as close as my friends (at my

new school).

Q: Good to know.


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Teens when asked if they have anyquestionstheyll say no.

Teens when asked if they would like toknow more about something will open up.


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Take away!The communication gap between teens and

caregivers can be bridged moreimportantly teens with

chronic health conditionswant to bridge it.


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Teens are highly

engaged in their health They just define quality of lifedifferently. Their measurements?social network & mood.

Teens may be more holistic


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Whats meaningful for

teens is often meaningful

for caregivers too. They just use a different

language to express it. Improve quality of care


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PHRs that use the

lanaguage of teens will

sustain their interest teen language includes music,

pictures, emotion, networktechnology, and self expression

emotional connections


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LIVING PROFILES

Primary goal and innovation is to designa new communication space for teens andtheir caregivers.

HypothesisTools that increase self awarenessand spark meaningful conversationwill empower a healthy transition.


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LIVING PROFILESPrototype PHR and

mood meter


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LIVING PROFILESPrototype PHR and

mood meter


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Summary

Start with the patients perspective Design research is a powerful methodology

Co-create with end users

New channels of communication are key

Its a behavior change for all of us


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Resources

Demohttp://living-profiles.net/qolt/w/jill.html#ShowVisualView

Probe downloadshttp://livingprofiles.net/?page_id=60

RWJF linkhttp://www.projecthealthdesign.org/projects/overview-2006_2008/405828
http://living-profiles.net/qolt/w/jill.htmlhttp://livingprofiles.net/?page_id=60http://livingprofiles.net/?page_id=60http://living-profiles.net/qolt/w/jill.htmlhttp://living-profiles.net/qolt/w/jill.htmlhttp://living-profiles.net/qolt/w/jill.html


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LIVING PROFILES

design researchProject HealthDesign, Robert Wood Johnson Foundation

Lisa NugentGlobal Creative DirectorCross-Sector Innovation & Design

JOHNSON & JOHNSONConsumer & Personal Products WorldwideDivision of Johnson & Johnson Consumer Companies, Inc.

GLOBAL STRATEGIC DESIGN OFFICE

601 W 26th StreetNew York, NY 10001Tel 212.462 7015


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Project HealthDesign Part 1Lessons and Models

Colorado Care TabletSteve Ross MD

2010 AMIA Now!May 2010


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Care Transitions: A Major Challenge

Care transition: Moving fromone setting of care to another(esp. hospital home)

Abrupt: information overload

Risk of readmission or worse Wrong meds taken Wrong care of wounds, catheters,

intravenous lines Not sure what to look out for Not sure who to follow up with

and when


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Scope of the Problem

Prescribing errors (7.6% of Rxs) and potential adversedrug events (3% of Rxs) are common in the outpatientsetting 1

Medication discrepancies after discharge are common,and lead to preventable readmissions 2

1Gandhi TK, J Gen Intern Med 2005; 20:837-8412Coleman EA, Arch Intern Med 2005; 165:1842-1847


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Proven Value: Standalone PHR + Coach

Eric Coleman Care Transitions Intervention Goal: Reduce inappropriate readmission Four pillars

1. Medication self-management2. Patient-centered record3. Primary care and specialist followup4. Knowing red flags

Intervention: Coach + Personal Health Record RCT: 90 day rehosp 16.7% vs 22.5%, p=.04

Coleman EA, Arch Intern Med 2006; 166:1822-1828


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PHR: Care Transitions Intervention


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PHR: Care Transitions Intervention


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Care Transitions Intervention PHR

Possible keys to effectiveness Intuitive user interface Driven by a detailed model of quality improvement

Directive: patient knew what to do with it Well integrated into medical system

Clear value to patient But use still dropped off substantially months later


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Limitations of Paper PHR

Many patients identify medications by shape, size, and color,not name

Drug names are redundant and inscrutable: easy tounintentionally duplicate medications

Tiazac and Cardizem are the same ingredient Norvasc and Plendil are slightly different ingredients in the same

class Authoritative drug information isnt accessible

For individual medications For drug regimen

Intended medication list isnt always clear


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Benefits of an Electronic PHR

Provide pictures Prevent duplication of medications Make it easy to get authoritative information

Help patients build and reconcile medication lists bylinking to sources of personal medication information

Care transitions may be the ideal use case of interoperable PHRs


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Design Phase Methods

13 Home interviews with 20 participants (olderpatients +/- caregiver) Taped and transcribed

Photographed methods for managing medicationsand medication information 4 group interviews with 13 participants (2 exploratory,

2 confirmatory)


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Patients: Unmet Information Needs

Common concerns: Will this medication cause a side effect? Im not feeling wellcould it be one of my medications? Will it hurt my body to take so many medications? Are the medications safe to take together? What about non-prescription meds, herbals, vitamins, and

supplements?

Common barriers: Medication names are confusing and duplicative May identify medications by color and shape, not name


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Proposed Functional Specifications

Form factor: touch screen tablet Mobile to accommodate distributed meds (WWAN) Simplified interface, large fonts

Bar code scanning of pill bottles Accommodate voice input?

Contextual links to medication information

Allow import / comparison of medication lists frompharmacies, doctors, & hospitals


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Technical Issues

l d


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Using RxNorm to Normalizing Medsand Link to Pictures and Consumer Info


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Sources of Medication ListsPrescribed Med Data

Dispensed Med DataReal

MedicationList

No real listin inter-operable

world


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Different Sources, Different Utilities

DISPENSED / FULFILLED From pharmacy systems

(SureScripts / RxHub)

Can assess adherence Cant tell if active or not Includes NDC code

Med Hx only available if electronic prescribing used

PRESCRIBED From electronic medical

records

Cant assess adherence Can tell if active Uses abstract medication

identifier, or arbitrary NDC

code Med Hx only available if

EMR used

Li i d A il bili f M d Li


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Limited Availability of Med Lists:EMR

Many ambulatory doctors dont keep electronic medlist (but more will with eRx incentives)

Even hospitals with EMR dont necessarily encode (ortransmit) the discharge medication list Just the last state of the MAR (med administration

record) Surescripts will only provide medication history to

doctors/institutions who eRx



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Limited Availability of Med Lists:Surescripts

Surescripts is the primary gateway for eRx SureScripts (retail pharmacies) merged with RxHub

(PBMs)

Nearly all chain pharmacies and main independents Provides 13 months of fulfillment data in 2 forms:

Web accessible clinician app: Prescription History EMRs can receive data

No fee for these services for eRx adopters



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Limited Availability of Med Lists:Surescripts

BUT Some practices using certified EHRs decline to pay for full eRx

(for connectivity to the Surescripts network) Medications paid for by cash to independent pharmacies. Some sources dont provide Rx data for HIV-related meds Claims data often have a 30 day lag Few Medicaid programs provide fulfillment data Contractually, certified EMRs may only request the Prescription

History within a certain time period of a scheduled clinic visit; itcannot be requested ad hoc


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User Interface Issues


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Unexpected User Interface Issues

For these older users Building the medication list

Older users didnt like the idea of selective input

from various doctors electronic medication lists Preferred that medications be pooled Would have really liked help from pharmacist!

Maintaining the medication list Great concern that they might corrupt the doctors

list


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Addressing UI Challenges

Simplify, simplify, simplify! Minimize options Keep linear wizard structure within options (step 1

step 2 step 3)


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Use of Tablet PC and Scanner


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Testing of Prototype

Pictures greatly appreciated Older users definitely liked the size of the tablet

much more than small type on mobile devices

Touch screen issues Sometimes balky Keyboard less easy than mechanical

Common med tasks easier with CCT than GoogleHealth Patients in their 70s found it appealing, but patients in

their 80s said I smell computerand I say no


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Conclusions

Care transitions are still a perilous time, with greatpotential for patient empowerment

More true eRx more prescribing and fulfillment data

But lots of data from multiple sources noise For older users, keep it simple and test your

assumptions Dont forget the pharmacist Tablet: great pseudo-mobile platform for older users Future: Will iPad provide even friendlier platform?

TRUE Research Foundation &Diabetes Institute at Walter ReedProject HealthDesign: Round 1 What the 9 Teams Demonstrated

Vanderbilt University


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Diabetes Institute at Walter ReedArmy Medical Center

University of Colorado at Denver &

Health Sciences Center

University of California, SanFrancisco

University of Rochester

Stanford University

RTI International & The Cooper

Institute

University of MassachusettsMedical School

University of Washington

s38: project healthdesign round 1-lessons and models

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