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Presents an overview of health IT technologies, such as devices, telehealth, electronic health records, analytics, coordinated care, and health information exchange. The goal is not just to list trends but to show their relationships and dependencies, suggest ways they can contribute to improvement in health care, and provide frameworks for understanding their strengths, weaknesses, and impacts.
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The Scope of Health Information Technology:
Progress and Challenges
Andrew Oram
This work is licensed under the Creative Commons Attribution 4.0 International License.
September 9, 2015
Biographical information
The Scope of Health IT Andrew Oram
Andrew Oram is an editor at the technical publisher and information provider O'Reilly Media, specializing currently in open source, programming, and health IT. He is also a weekly correspondent on health IT and health policy for HealthcareScene.com.
Email: [email protected]: @praxagoraGoogle+: https://plus.google.com/+AndyOram/LinkedIn: http://www.linkedin.com/in/andyo/SlideShare: http://www.slideshare.net/andyoram
There are no conflicts of interest in this presentation.
A vision of ideal health information technology
The Scope of Health IT Andrew Oram
The intelligent hospital at HIMSS
Some innovations of the intelligent hospital
The Scope of Health IT Andrew Oram
Medicines are checked against prescriptions via bar codes and delivered by robots
EMTs radio the patient's status into the ER before the patient arrives
A buzzer goes off if a clinician approaches a patient without washing hands first and a non-compliant event is recorded
Alternative visions of health IT
The Scope of Health IT Andrew Oram
Things that IT does to us
Things that IT helps us do for ourselves
Sensors report whether an elderly person fails to get out of bed
A buzzer goes off if a clinician approaches a patient without washing hands first
A black box records everything that goes on in the operating room
A secure texting system allows doctors to keep in touch with patients
A fitness device reports our progress during exercise
A personal health record allows us to maintain and share our data
(cf. Machines of Loving Grace by John Markoff)
The care universe and health IT
The Scope of Health IT Andrew Oram
We start with an individual interested in his or her health
Individual
The care universe and health IT
The Scope of Health IT Andrew Oram
Add caregivers
The care universe and health IT
The Scope of Health IT Andrew Oram
Add health IT
What is a medical device?
The Scope of Health IT Andrew Oram
We tend to think of a medical device as this
But increasingly it's going to look like this
or this
Devices: mobile
The Scope of Health IT Andrew Oram
Useful for texting, delivering video, and other telehealth
Ubiquitous and usually affordable
Take blood glucose readings
But also can be used to:
Check athletes for concussions
Test vision
Measure footsteps for exercise and for fall prevention
Devices: roles
The Scope of Health IT Andrew Oram
Monitoring: are you in bed or moving about?
Adherence: did patient take prescribed medication?
Delivery of alerts and information
Fitness, measuring vital signs, etc.
Devices: miniaturization and democracy
The Scope of Health IT Andrew Oram
More computing power in the same space
Allows wide distribution to under-served populations and regions of the world
May allow untrained individuals to perform tasks formerly requiring expensive technicians
Miniaturization and cost reductions driven by:
Cheaper, more accurate sensors
Lower power requirements
Simpler, more generic (commodity) materials
Devices: dependencies
The Scope of Health IT Andrew Oram
Must access clinical data/analytics to deliver useful alerts and other information
Should interoperate with other devices and with EHRs, requiring:
An always-on network
Radios (cellular, WiFi, Bluetooth, Near Field Communication)
Standards
Data requires provenance (metadata about who generated the data, under what circumstances, etc.) to be shared and stored in medical records
Devices: standards
The Scope of Health IT Andrew Oram
Numerous Internet protocols covering data exchange
Yet each device manufacturer creates its own unique Application Programming Interface (Apple's HealthKit may become de facto standard)
Fundamentals defined by IEEE in 11073 family
An alphabet soup of organizations is creating standards
Data Distribution Services (DDS) often recommended for interaction
IEEE 11073
The Scope of Health IT Andrew Oram
Endorsed by the Continua Health Alliance
Multiple standards cover thermometers, pulse oximeters, blood pressure monitors, etc.
Tries to create standard names, data structures
International participation in defining the standards
Data Distribution Services (DDS)
The Scope of Health IT Andrew Oram
You can configure who is allowed to receive information, how often it is transmitted, and other aspects of communication
Numerous filtering capabilities
A standard from the Object Management Group (OMG)
Uses the publisher/subscriber model (requires intermediate storage)
Very complex, trying to cover every eventuality (248-page specification)
Much more than I can mention here...
Mobile apps
The Scope of Health IT Andrew Oram
Apps are extremely varied, and range from measuring footsteps tocollecting patient data for clinical assessment
Mobile apps rest heavily on:
Software apps in the fitness and medical spaces are growing robustly in number and adoption
Comparing data from the user to results of clinical research
Linking users with other users of the app
Linking to other apps and data sources
Mobile apps: business models and regulations
The Scope of Health IT Andrew Oram
Offering services, such as storage and advice
Collecting and often selling user data, which presents ethical issues(security, consent) even if it is anonymized
Business models usually include:
Like devices, apps could benefit from standards
FDA has tried to keep a light touch, but still regulates apps that promise diagnosis or treatment
Telehealth
The Scope of Health IT Andrew Oram
Deliver reminders and encouragement over text messaging
Deliver information through video
Connect doctor to patient or consulting doctor remotely
Remote monitoring and the patient-centered medical home (PCMH)
Services such as WebMD, HealthTap,and innumerable web sites
Patient portals
Adoption depends on changes to licensing rules and reimbursements
Telehealth: an illustration
The Scope of Health IT Andrew Oram
Contact is the prerequisite for behavior change and coordinated care
More than 60% of Medicaid patients—often high-cost patients—disappear from the view of states and health plans after leaving the hospital or clinic
A pilot shows:
Patient engagement rates jumped from 37% to 73%
ER visits per patient dropped from 7.14 to 3.45 per month
An app installed on the patients' devices helps them keep in touch
Telehealth: common uses
The Scope of Health IT Andrew Oram
Delivering care to remote areas or those with little medical coverage
Continuous follow-up to care given in the doctor's office
For example, text reminders (which have demonstrated positive effects on behavior) and informational videos
Detecting changes in health status in order to trigger urgent intervention
Tracking behavior and health for research
Often, data can be collected by a less trained professional, or even the patient herself, and transmitted to a health center
Innovate, low-cost devices contribute to telehealth
The care universe and health IT
The Scope of Health IT Andrew Oram
The care universe and health IT
The Scope of Health IT Andrew Oram
Add data exchange
Data exchange: HIE
The Scope of Health IT Andrew Oram
Now learning to offer more added value, such as patient segmentation
Health information exchanges were historically expensive and could not survive when initial grants expired
Still not widely adopted, because providers lack incentives to share data
Data exchange: roles
The Scope of Health IT Andrew Oram
Clinical research
Analytics (big data)
Coordinated care
Marketing
Data exchange: standardizing
The Scope of Health IT Andrew Oram
Data formats
Exchange protocols
Coding (ICD and SNOMED for diseases, codes for drugs, lab tests, etc.): semantic interoperability
Trust
Data exchange: formats
The Scope of Health IT Andrew Oram
FHIR: a modern programmer-friendly project including an open API
Blue Button: simple and somewhat more standardized
C-CDA: the current most widely used semi-standard
Apple, Microsoft, and other tech firms will try to establish their own standards through projects such as HealthKit
SMART: An open standard now layered on top of FHIR
Fast Healthcare Interoperability Resources (FHIR)
The Scope of Health IT Andrew Oram
RESTful API with the usual accoutrements:
Multiple common formats (XML, JSON)
Goal: bring health data exchange into the 21st century
Must be implemented in stages because of its size and the variety of health care settings
OpenID and OAuth for authentication
Needs to be supplemented with “profiles” for specific medical disciplines and other situations
SMART
The Scope of Health IT Andrew Oram
API allows data to be extracted (not inserted) into EHRs
Developed at Harvard Medical School with government (ONC) support
Good complement to FHIR (a more recent standard), for which SMART fills in some of the gaps, such as profiles
Reference implementation and sample apps developed
Data exchange: protocols
The Scope of Health IT Andrew Oram
CONNECT
Application Programming Interfaces: FHIR, SMART
Direct
Blue Button+ (works though Direct)
All forms of data exchange assume a working network with sufficient bandwidth
Data exchange: trust
The Scope of Health IT Andrew Oram
Direct Trust project depends on certificates, somewhat like Web browsers
How do you know that the person asking for a record is genuine?
One role of health information exchanges is to authenticate correspondents
We await corresponding mechanisms for FHIR and SMART
Images
The Scope of Health IT Andrew Oram
DICOM does not cover the radiologist's annotations that make an image useful, and therefore they follow no standard
Images are officially standardized through DICOM
Size of images drive clinics and hospitals to use cloud storage
Genetic testing and other “omics”
The Scope of Health IT Andrew Oram
Popular self-testing has limited value
Low cost of genome sequencing allow more and more patients to benefit from targeted treatments
Size (3.2 gigabytes per human genome) places strains on storage and data transfer for research
Genomic data is considered to be impossible to deidentify
“Cells are just living, squishy parallel processors”—synthetic biology developer
The care universe and health IT
The Scope of Health IT Andrew Oram
The care universe and health IT
The Scope of Health IT Andrew Oram
Add other actors
(For an even more overwhelming view of sharing patient data, see The Data Map)
Analytics: roles
The Scope of Health IT Andrew Oram
Patient segmentation or risk stratification (who is most at risk of hospitalization?)
Utilization of resources (rooms, staff, equipment)
Cost setting (capitation)
Research (new treatments, clinical prediction models)
Patient peer data sharing (such as PatientsLikeMe and the Personal Genome Project)
Physician comparison (is one doctor doing way better than others?)
Analytics and randomized double-blind trials
The Scope of Health IT Andrew Oram
Contrasts
Much debate over the relationship
Clinical trials use samples that are not representative of the general population, whereas “big data” takes known facts about this population
Complementarity
Clinical trials have strictly controlled variables, whereas “big data” analytics deal with messy data
Use analytics during clinical trials to influence its direction
Use analytics on population health data to find promising hypotheses for clinical trials
Use analytics after clinical trials to check results, such as adverse effects
Why analytics are central to change
The Scope of Health IT Andrew Oram
Clinical trials can be augmented through data collected on ordinary people
Accountable care requires data about how well interventions are working and how resources are being used
Behavior change requires predictions about expected outcomes
But analytics also have a dependency: they are far more accurate with large data sets, which requires interoperable records
Consumer choice requires transparency: accurate data on provider prices and quality
Unexpected insights such as adverse drug effects require big data analysis
Electronic health records (EHRs)
The Scope of Health IT Andrew Oram
APIs allow innovation by third-party developers — all-in-one solutions are not sustainable
Security is crucial (and broadly missing) but frustrating to users
Open source software would allow both interoperability and limitless innovation
Interoperability supports care coordination and research, but still elusive
Usability is critical to safety, and can be determined only during realistic use with input from clinicians
Informative: Conveys necessary information between staff, along with relevant alerts and other useful information
Some aspects of quality in electronic health records (page 1)
The Scope of Health IT Andrew Oram
Complete: Allows you to do what you need, and combines all inputs, such as lab reports and pharmacies
Correct: Does what you ask
Orderly: Fits natural workflows, organizes information in the way the clinician needs, and enforces protocols
Clear: Simple and easy to use
(Usability is an organic, interactive quality, so lists of traits like this may be of limited value.)
Secure: Enforces appropriate access by individuals or teams
Some aspects of quality in electronic health records (page 2)
The Scope of Health IT Andrew Oram
Flexible: Users can customize the system to match their behavior
Consistent: Acts predictably no matter what part of the system you're in or who you are
Fast: Responds in time to preserve the user's train of thought (voice recognition is popular), does not interrupt with needless alerts
Intelligent: Draws inferences, eliminates duplication of user effort
Failsafe: Preserves intentions of the user, is not confusing, and allows easy error correction
Security—regulation
The Scope of Health IT Andrew Oram
Regulations vary state by state and are intimidating
HIPAA does not prevent doctors from sharing data with patients—in fact, it requires patient access
Two-factor authentication (e.g., a password and card or fingerprint) is required in some cases (e.g., prescription of controlled substances)
Security—technology
The Scope of Health IT Andrew Oram
Encrypt data “in transit” (over email or the Web)
Encrypt data “at rest” (such as in an electronic health record system)
Prohibit removal of data, or require encryption on laptops and other devices
Enforce strong passwords
Fundamentals are the same as in any computer system
Assign rights to teams or individuals on a precise, as-needed basis
Log all accesses and issue alerts on suspicious accesses
Accuracy: Errors more likely to be fixed
Personal health records (PHRs)
The Scope of Health IT Andrew Oram
Can store any data entered by the individual, including device output and other patient-generated data
Stored by the patient, not the clinic or hospital
Advantages of giving patients control over their records:
Data exchange: patients can share with clinicians, caregivers, and researchers
Privacy: no hidden data transfers without patient consent
Patient maintains full control over who gets the data
What makes an individual adopt healthier habits?
Motivations to change
The Scope of Health IT Andrew Oram
Individuals (patients/consumers)
Motivations to change: individuals
The Scope of Health IT Andrew Oram
Individuals' goals differ from their clinicians' goals
Individuals want to know what precise steps will benefit them
Both peer and clinical relationships are central
Sustained support from clinicians is needed to drive recalcitrant patients to change
Encouragement works better than exhortation (accentuate the positive)
Health IT can keep the team in contact and provide consistent contact with the individual trying to improve
Individuals require continuous support from clinicians and/or peers
Motivations to change
The Scope of Health IT Andrew Oram
Motivations to change: clinicians
The Scope of Health IT Andrew Oram
Vague mandates (i.e., concern for quality) cannot be consistently honored
Clinicians are busy, often undercompensated, and sensitive to rewards and penalties
Payers must establish frameworks for coordinated, long-term care in order to set positive priorities for clinicians
Clinicians' priorities are driven by payers
Motivations to change
The Scope of Health IT Andrew Oram
Individuals' priorities are also influenced by payers
Motivations to change
The Scope of Health IT Andrew Oram
Motivations to change: payers
The Scope of Health IT Andrew Oram
Many payers would like to reward outcomes (fee for value)
Insurers are getting worried that individuals or their employers will drop or cut back on coverage because costs are outrageous
To reward outcomes, the cost of a patient or group of patients must be accurately set
Fee for value depends on research and the analysis of huge collections of data on patient diagnoses and outcomes
Payers need research and analytics to set payments
Motivations to change
The Scope of Health IT Andrew Oram
Motivations to change: researchers
The Scope of Health IT Andrew Oram
Research without short-term pay-offs depends on government funding
Research and analytics are labor-intensive fields with high costs
The government is also responsible for setting the agenda for public health research
Researchers' funding and agendas are controlled by government
Motivations to change
The Scope of Health IT Andrew Oram
Government also makes payments and regulates payers
Motivations to change
The Scope of Health IT Andrew Oram
Motivations to change: government
The Scope of Health IT Andrew Oram
Powerful pressure from an organized and aware public can overcome inertia
Disruptive change by law and regulation is thwarted by incumbent institutions that:
External pressures such as rising costs can encourage change, but public activism is required to turn change in a constructive direction
Possess ample funds for lobbying and publicity
Employ a large staff (read: self-interested voters)
Warn of failure and fulfill their own predictions
Governments respond to pressure from the public
Motivations to change
The Scope of Health IT Andrew Oram
Pay for performance rests on accurate data about costs, requiring analytics
Dependencies—technical
The Scope of Health IT Andrew Oram
Analytics are severely limited without data exchange among EHRs
Devices require networks and standards to share data
Data sharing requires provenance
Dependencies—organizational
The Scope of Health IT Andrew Oram
Most individuals won't make major lifestyle changes without sustained support from clinicians (coordinated care) and/or peers
EHR vendors will not implement data exchange until required by purchasers, who currently are hospital and clinic administrators
Clinicians will instituted coordinated care when required by payers (pay for performance) or by competition from disruptive sectors
The Scope of Health IT Andrew Oram
Use insights from research
Roles for clinicians in improving health IT
Insist that procedures and records be focused on clinical care
Participate in design of record systems
Send data to patient and to next stage of care
Use patient-generated data
Adopt telehealth where legal and feasible
Roles for developers in improving health IT
The Scope of Health IT Andrew Oram
Start with a business model that respects where the power and money lie in the health care industry, but try to disrupt it
Bring the clinicians or other users onto the development team
Adhere to standards but look for the purpose that lies behind them and beyond them
Fiercely protect patient privacy—earn their trust
Some topics not mentioned in this talk
The Scope of Health IT Andrew Oram
Gamification (.e.g., brain strengthening apps)
Artificial intelligence support, or evidence-based medicine on steroids (e.g., IBM's Watson)
Effects of technology on clinician/patient interaction
Some U.S. organizations in health IT
The Scope of Health IT Andrew Oram
American Health Information Management Association (AHIMA)
Healthcare Information and Management Systems Society (HIMSS)
Food and Drug Administration (FDA)
Office of the National Coordinator (ONC)
Center for Connected Health (CCH)
Patient Privacy Rights (PPR)
Some health IT resources
The Scope of Health IT Andrew Oram
Trotter, F., & Uhlman, D. Hacking Healthcare. O'Reilly Media, October 2011
President’s Council of Advisors on Science and Technology. PCAST report — Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward. December 2010.
Commonwealth Fund. A Vision for Using Digital Health Technologies to Empower Consumers and Transform the U.S. Health Care System. October 2014.
Oram, A. The Information Technology Fix for Health:Barriers and Pathways to the Use of Information Technology for Better Health Care. O'Reilly Media, April 2014.
Contact
The Scope of Health IT Andrew Oram
Email: [email protected]: @praxagoraGoogle+: https://plus.google.com/+AndyOram/LinkedIn: http://www.linkedin.com/in/andyo/SlideShare: http://www.slideshare.net/andyoram
