RTI International

RTI International is a trade name of Research Triangle Institute. www.rti.org

Patient-Generated Health Data

Exploring its definition and impact on care delivery and health IT”

RTI International

Diabetic Tester that talks to iPhones and Doctors

Mossbert W. The Wall Street Journal. 2012 January 5. Available at: http://online.wsj.com/article/SB10001424052970203513604577140830225124226.html

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As Smartphones Get Smarter, You May Get Healthier: How mHealth Can Bring Cheaper Health Care To All

Bluestein A. Fast Company. 2012 January 9. Available at: http://www.fastcompany.com/magazine/162/health-industry-smartphones-tablets

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Overview

The Office of the National Coordinator for Health IT requested a focused analysis of patient-generated health data (PGHD) to:– Describe and define PGHD– Understand current state and anticipate future

directions RTI conducted:

– A brief environmental scan including: Informal discussions with key experts including patients Selected literature & website review Participation in a “listening session” at HIMSS 2012

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Research Questions

How should PGHD be defined? What are the primary technical, legal,

operational and other issues? Who has identified and attempted to address

these issues?

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Scenario 1 - Hypertension

Jane Hart is pre-hypertensive and her primary care provider (PCP) asked her to track her blood pressure (BP) twice a day. Jane purchased a BP cuff in a retail outlet and records her BP in her daily log (on paper). Each week, Jane sends the readings via secure email to her PCP.

Jane takes BP at home (twice daily)

Jane records BP using paper log(twice daily)

Jane emails readings to her PCP (weekly)

PCP reviews BP readings (weekly?)

Data Capture Data Transfer Review/Document

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Scenario 2 - Diabetes

Jack Sprat has diabetes and is trying to improve his diet. To help determine if his diet is “working”, he purchased a glucometer to watch his blood sugar level, and signed up for a PCHR (patient-controlled health record) offered by My-Health-eMe (MHM). Using the glucose tracker app on MHM, he transfers data from the glucometer to his laptop using a standard USB interface cable. The tracker app saves his glucose measurements over time, allows him to add notes about his meals, compares his latest data to previous weeks’ data, and creates a summary for his next PCP visit.

Jack’s glucometer records glucose before meals Jack

uploads data to MHM

Jack adds meal notes using tracker app

Jack shares summary with PCP at visit

Data Capture Data Transfer Review/Document

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Scenario 3 - Asthma

Louise has chronic asthma and her pulmonologist is anxious to help her avoid another ER visit. She agreed to use a special new inhaler with built-in monitoring capabilities. When Louise uses the inhaler, her provider will know. Medication data, patient ID, location data, time and dosage goes directly into an asthma database for the provider to review, and possibly to add to Louise’s medical record.

Louise uses wireless inhaler with automated data capture (as needed)

Inhaler data transmits to “cloud” database (2x/day)

Provider reviews inhaler data (timing?)

Data Capture Data Transfer Review/Document

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Flow diagram for PGHD

Data Capture Data Transfer Review/Document

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How should PGHD be defined?

PGHD definition– Health and medical data – including disease history, symptoms,

physiology, treatments, lifestyle, and other information – created, recorded, gathered or inferred by or from patients or their designee Patients, not providers, are primarily responsible for capturing or recording these data. Patients control sharing of data to health care providers and others. Distinct from: capture and flow of health and medical data as directed by providers.

PGHD context– Advances in data-driven medical science, EHRs, the internet, and mobile

technology are enabling rapid and substantial growth of PGHD– Data capture/flow may be partially, fully, or not-at-all automated– Highly varied capture/flow processes are relevant

Different: devices; conditions; provider expectations; data types and timing, etc. Patient motivations include: self-care, seeking advice, responding to requests

– No guarantee of participation or consistent use among patients Access, usability, technology, educational, health literacy, economic, etc. barriers

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Operational questions

Operational – Capture/Transfer

What will motivate people to participate? What barriers should be removed to enable flow? How is a person informed, trained and supported?

What (patient-side) technologies support PGHD?

– Review/Document What will motivate providers/staff to participate? What barriers

should be removed to enable flow? What existing (or new) review processes are needed? How will they

scale? What (provider-side) technologies support PGHD?

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Technical, Legal questions

Technical– What safeguards, standards, authentication, interfaces, and data

types/definitions are needed?

Legal– What existing (or new) liability is there? How are expectations set

and communicated?

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More Information

Michael ShapiroSenior Health Informaticist

312.777.5227

mshapiro@rti.org

Jonathan WaldDirector, Patient-Centered Technologies

jwald@rti.org