the scope of health information technology: progress and challenges

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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: andyo@oreilly.comTwitter: @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: andyo@oreilly.comTwitter: @praxagoraGoogle+: https://plus.google.com/+AndyOram/LinkedIn: http://www.linkedin.com/in/andyo/SlideShare: http://www.slideshare.net/andyoram

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