Patient-Generated Health Data

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Patient-Generated Health Data

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

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Diabetic Tester that talks to iPhones and Doctors
Mossbert W. The Wall Street Journal. 2012 January
5. Available at http//online.wsj.com/article/SB1
0001424052970203513604577140830225124226.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 emails readings to her PCP (weekly)
PCP reviews BP readings (weekly?)
Jane records BP using paper log (twice daily)
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.

Jacks glucometer records glucose before meals
Jack adds meal notes using tracker app
Jack shares summary with PCP at visit
Jack uploads data to MHM
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 Louises medical record.

Louise uses wireless inhaler with automated data
capture (as needed)
Provider reviews inhaler data (timing?)
Inhaler data transmits to cloud database
(2x/day)
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 Shapiro
• Senior Health Informaticist
• 312.777.5227
• mshapiro_at_rti.org

Jonathan Wald Director, Patient-Centered
Technologies jwald_at_rti.org