accessibility and usability in health it: a research and action conference to empower people with...
TRANSCRIPT
Accessibility and Usability in Health IT:A Research and Action Conference to Empower People with Disabilities, Older Adults and Caregivers
September 17-18 2015 Washington DC
Panel on Industry and Advocacy Perspectives--Next Steps in Creating an Accessible HIT Ecosystem
Make Consumers Owners of All Their Health Information
Elaine A. Blechman, Ph.D.Professor Emerita, U. of ColoradoPresident, Prosocial Applications
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Achieving Accessibility and Usability
• Vision: “Health IT is accessible when and where it is needed to improve and protect people’s health and well being.”
• Mission: “Improve health, healthcare and reduce costs through the use of information and technology.”
From the Federal Health IT Strategic Plan 2015-2020. http://healthit.gov
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Process of Federal Health IT Strategic Plan
From the Federal Health IT Strategic Plan 2015-2020. http://healthit.gov
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Current Status
• About 135 million U.S. consumers coping with chronic conditions and disabilities spend 12% or more of their incomes on unsafe, overpriced and ineffective healthcare.
• Old Health IT: 1960’s-vintage, fragmented, non-interoperable, provider- and vendor-controlled electronic health records (EHRs), patient portals and personal health records aggravate consumers’ problems
• "...currently...hospitals and health systems find it challenging to share information to support clinical care, let alone other uses [such as transmission of health information to patients]... sharing and integrating data across EHRs is complex, time consuming and costly. Sometimes, it is simply not possible" (American Hospital Association, 2015).
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“Old” Health IT
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Consumers Pay for 19% of U.S. health spending
From Deloitte’s Dig deep: Impacts and implications of rising out-of-pocket health care costs. www2.deloitte.com.
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Interoperability: Not yet made here.
Hillestad R, Bigelow J, et al. Can electronic medical record systems transform health care? Potential health benefits, savings, and costs. Health Aff 2005 24:1103-1117.
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Barriers to EHR Interoperability
From the 2015 American Hospital Association report, "Achieving Interoperability that Supports Care Transformation.” www.aha.org
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Consumers: 0. The health-industrial complex: billions.
• “Risperdal is a billion-dollar antipsychotic medicine with real benefits — and a few unfortunate side effects.
• It can cause strokes among the elderly. And it can cause boys to grow large, pendulous breasts; one boy developed a 46DD bust.
• “Yet Johnson & Johnson marketed Risperdal aggressively to the elderly and to boys while allegedly manipulating and hiding the data about breast development. J&J got caught, pleaded guilty to a crime and has paid more than $2 billion in penalties and settlements. But that pales next to some $30 billion in sales of Risperdal around the world.”
• Kristof, N. When Crime Pays: J&J’s Drug Risperdal. NY Times, September 17, 2015.
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Consumer Health Information: Held Hostage
• Landmark NIH study shows intensive blood pressure management may save lives:
• “...many details of the study have not been released. It will be months before the study is presented at a major scientific meeting and possibly even longer before it is published. All we know at this point is that there was a 30 percent reduction in heart attacks and strokes and a 25 percent reduction in deaths. But there are a lot of critical details that have yet to be revealed...We ...don’t know about the risks of aggressive treatment or the types of patients who derived particular benefit. Without knowing all this information, it is not possible for doctors and patients to know how to translate these findings into action.”
• Topol, E.J. & Krumholz, H.M. Don’t Delay News of Medical Breakthroughs. NY Times, September 18, 2015.
©2015 Smart Health Records, Inc. | All Rights Reserved
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“New” Health IT
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Promising Developments Recommendations
Offer New Health IT endorsing these outrageous propositions:• Patients are the ultimate owners of their health information
records;• Patients know whom they trust;• Patient know who they are, facilitating accurate identification;• Patients are aware of their own medical conditions; and• Patients benefit from having singular, comprehensive and
virtual personal health records (PHRs) that travel with them to all their healthcare encounters and are updated and accessed by all their providers instead of multiple, incomplete EHR records.
From the November 2013 JASON report, "A Robust Health Data Infrastructure.” http://fas.org/irp/agency/dod/jason/health-data.pdf
©2015 Smart Health Records, Inc. | All Rights Reserved
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New Health IT: SmartPHR® Health Record Accounts
• Patients own the contents of singular, comprehensive, cloud-hosted accounts that authorized providers can update at all encounters.
• Patients and their authorized caregivers and providers have anytime/anywhere/any device/any EHR access to their accounts.
• Patients exclusively control and manage human and machine user access to their account.
• Patients authorize capture and integration into their accounts of multi-source multi-type data from EHRs, imaging centers, laboratories, and remote monitoring devices.
• Architecture is based on published interoperability standards, APIs, and protocols.
• Data are secured by end-to-end encryption and two-factor authentication.
©2015 Smart Health Records, Inc. | All Rights Reserved
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SmartPHR® Health Record Account on the iPhone
©2015 Smart Health Records, Inc. | All Rights Reserved
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New Health IT: Research & Policy Recommendations
• Commission legal research on consumer ownership of their data• Encourage DARPA’s Brandeis project to pursue innovations in security for storage
and transport of consumer-controlled, health information.• Permit Apple to continue to allow owners of iOS devices to hold the private
encryption keys for their mobile health apps. • Require CMS-funded Medicare and Medicaid providers, NIH-funded clinical trial
directors, and FDA-evaluated drug and device manufacturers: As a condition of reimbursement or informed consent, To upload exact copies of data, documents, and images Collected or created for the purposes of delivering reimbursed or self-paid care
or evaluating treatments, drugs, or procedures, Within 5 business days of care delivery or 30 days of clinical trial cessation or
completion In standardized, machine-readable HL7 format via Meaningful Use Stage 3 API
to patient-controlled health information repositories.