“PHR functionalities being developed at NLM

Clement McDonald MDDirector, Lister Hill National Center for Biomedical

Communications

M-Health iinititaive

June 4, 2009

Distinctions among three kinds of PHRsDistinctions among three kinds of PHRsPortal PHRsPortal PHRs–– provide windows to a single provide windows to a single institutioninstitution’’s existing medical record systems existing medical record systemStand alone PHRsStand alone PHRs-- Patient enters their own dataPatient enters their own dataLinking PHRs Linking PHRs -- pull data from many sources to create pull data from many sources to create one personone person’’s record.s record.These differences are important because These differences are important because

Portals are Portals are ““easyeasy”” and good and good –– but incomplete but incomplete Stand alones are Sort of easy Stand alones are Sort of easy –– but burdensome but burdensome The linkers are the The linkers are the ““bestbest”” but most difficult but most difficult

Why an NLM PHR Why an NLM PHR

Explore new ways to deliver health Explore new ways to deliver health information information

One of NLMOne of NLM’’s mission is to deliver high quality s mission is to deliver high quality health information to the consumer health information to the consumer A PHR offers new opportunities to target such A PHR offers new opportunities to target such delivery, and increase its uptake.delivery, and increase its uptake.Our PHR includes Our PHR includes ““precision guidedprecision guided”” education education for preventive care for preventive care -- rule based reminders to rule based reminders to consumers . consumers .

NLMNLM’’ss LONG interest in EHRs and LONG interest in EHRs and PHRsPHRs

NLM was (one of the earliest) and most persistent NLM was (one of the earliest) and most persistent supporters and funders of electronic Health supporters and funders of electronic Health Records Records ----for decades before it was popularfor decades before it was popularNLM has long championed giving patients the NLM has long championed giving patients the information they need to make good health care information they need to make good health care choices including PHRschoices including PHRs––““provide it on a thumb driveprovide it on a thumb drive””. Don Lindberg MD. Don Lindberg MD

Opportunities to hone NLM supported Opportunities to hone NLM supported vocabularies vocabularies

NLM is at the epicenter of the clinical NLM is at the epicenter of the clinical vocabulary standards world vocabulary standards world NLMs PHR is based on these vocabulary NLMs PHR is based on these vocabulary standards because that is the right way to build standards because that is the right way to build systems AND because we want a real world systems AND because we want a real world environment for obtaining direct experience with environment for obtaining direct experience with which to extend and improve these standardswhich to extend and improve these standards

It is already shaping NLM supported It is already shaping NLM supported vocabulary standards vocabulary standards

LOINC expanded panel definitions into data LOINC expanded panel definitions into data capture widgets for NLMcapture widgets for NLM’’s PHRs PHR

Will show you . Will show you .

To make the prescription entry work, Kin Wah To make the prescription entry work, Kin Wah Fung created Rx.terms, a subset of Rx.Norm Fung created Rx.terms, a subset of Rx.Norm •• Rx.Terms already adopted by CMS for its post acute Rx.Terms already adopted by CMS for its post acute

care demo.care demo.•• Will show you Will show you

•• Had to add synonyms Had to add synonyms ““everywhereeverywhere””..

Research opportunities Research opportunities

PHRs present many opportunities for clinical PHRs present many opportunities for clinical research: including recruitment and data research: including recruitment and data collectioncollectionOpportunities for epidemiologic and quality Opportunities for epidemiologic and quality improvement research also exist improvement research also exist Research institutions need to work in the PHR Research institutions need to work in the PHR space to understand , influence and maximize space to understand , influence and maximize these opportunities.these opportunities.

NLMNLM’’ss PHRPHR

Over view Over view

It is targeted to the care giver who overIt is targeted to the care giver who over--sees the sees the care of their young children and/or frail elderscare of their young children and/or frail eldersIt is standIt is stand--alone alone –– no links to outside patient data no links to outside patient data

sources sources as of yetas of yet--Uses Uses NLMNLM’’ss standard vocabularies and HL7 vs. standard vocabularies and HL7 vs. 2.x data types 2.x data types Ties tightly to Ties tightly to NLMNLM’’ss Medline plus and other Medline plus and other federal information sources federal information sources Asks for no identifiers Asks for no identifiers --

It is at most, a limited data set per draft Recovery act It is at most, a limited data set per draft Recovery act regulations. regulations.

Technology Technology Pure web Pure web Forms generated on fly from stored definitions.Forms generated on fly from stored definitions.Open sourceOpen source

Ruby on rails application serverRuby on rails application serverMostly java script within clientMostly java script within client’’s browsers browser-- ScriptaculousScriptaculous , , Dojo and otherDojo and other

Encryption every where Encryption every where

NLMNLM--PHR highlightsPHR highlights

A single web page for A single web page for ““allall”” data entry and review data entry and review ––A different approach A different approach Clinical Clinical trials.govtrials.gov searchingsearchingPartial Partial ““datesdates”” –– using HL7 Date standardusing HL7 Date standard-- so so user can enter what they remember about the date user can enter what they remember about the date of an eventof an event---- just the yearjust the year-- for example. It allows , for example. It allows , but does not require an exact date but does not require an exact date Rule based form morphing. Rule based form morphing.

What shows up on the form depends the on rules and What shows up on the form depends the on rules and patient data. So different questions by gender and age. patient data. So different questions by gender and age.

High LightsHigh Lights-- LOINC based Entry LOINC based Entry Widgets Widgets

Large ( > 1000 ), and expandable library of Large ( > 1000 ), and expandable library of widgets for capturing widgets for capturing ““anythinganything”” Here is one for Here is one for recording exercise effort recording exercise effort

NLMNLM-- PHR highlights PHR highlights ––Data export Data export

Just to satisfy DonJust to satisfy Don-- Users can export data to their Users can export data to their own machine and put on any device they choose.own machine and put on any device they choose.

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Highlights Highlights –– coding & its benefitscoding & its benefits

All medical conditions, drugs, surgeries, etc are All medical conditions, drugs, surgeries, etc are coded via auto complete menus coded via auto complete menus –– a prea pre--requisite requisite for two other features:for two other features:One click links to educational info. One click links to educational info. Rule based (Precision guided) educationRule based (Precision guided) education--especially about prevention especially about prevention But users can over ride menu options with free text e But users can over ride menu options with free text e

Brief look at simple rule definitions Brief look at simple rule definitions ––

Rule Rule Definition Definition MaleMale gender = "Male" gender = "Male" Female Female gender = gender = ““Female" Female" SmokesSmokes smoker = "1 smoker = "1 -- YesYes““AgeAge time in years (todaytime in years (today-- birth year)birth year)

A more complicated rule (Framingham A more complicated rule (Framingham Risk equation) Risk equation) –– based on the simple rulesbased on the simple rules

100*(1 100*(1 -- pow(0.98767, exp(pow(0.98767, exp(31.764001 * (31.764001 * (log(log(ageage) ) -- 3.9213204) 3.9213204)

+22.465206 * (+22.465206 * (log(log(latest_total_chollatest_total_chol) ) -- 5.3628984) 5.3628984) -- 1.187731 * (1.187731 * (loglog((latest_hdl_chollatest_hdl_chol) ) -- 4.0146369) 4.0146369) + 2.552905 * (+ 2.552905 * (log(log(latest_systolic_bplatest_systolic_bp) ) -- 4.8376494) 4.8376494) + 0.420251 * (+ 0.420251 * (antihypertensive_treatmentantihypertensive_treatment --0.142802) 0.142802) + 13.07543 * (+ 13.07543 * (smokessmokes -- 0.3236202) 0.3236202) -- 5.060998 * (5.060998 * (log(log(ageage) * ) * log(log(latest_total_chollatest_total_chol) ) --

21.0557746) 21.0557746) -- 2.996945 * (2.996945 * (log(log(ageage) * ) * smokessmokes --1.2519882))));1.2519882))));

Demonstration Demonstration

It is not publically available for use yet . It is not publically available for use yet . But will show you what we haveBut will show you what we have