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

  1. 1. 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
  2. 2. 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.com Twitter: @praxagora Google+: 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.
  3. 3. A vision of ideal health information technology The Scope of Health IT Andrew Oram The intelligent hospital at HIMSS
  4. 4. 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
  5. 5. 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)
  6. 6. 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
  7. 7. The care universe and health IT The Scope of Health IT Andrew Oram Add caregivers
  8. 8. The care universe and health IT The Scope of Health IT Andrew Oram Add health IT
  9. 9. 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
  10. 10. 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
  11. 11. 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.
  12. 12. 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
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. 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...
  17. 17. Mobile apps The Scope of Health IT Andrew Oram Apps are extremely varied, and range from measuring footsteps to collecting 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. 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
  22. 22. The care universe and health IT The Scope of Health IT Andrew Oram
  23. 23. The care universe and health IT The Scope of Health IT Andrew Oram Add data exchange
  24. 24. 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
  25. 25. Data exchange: roles The Scope of Health IT Andrew Oram Clinical research Analytics (big data) Coordinated care Marketing
  26. 26. 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
  27. 27. 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
  28. 28. 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
  29. 29. 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
  30. 30. 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
  31. 31. 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
  32. 32. 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
  33. 33. 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
  34. 34. The care universe and health IT The Scope of Health IT Andrew Oram
  35. 35. 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)
  36. 36. 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?)
  37. 37. 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
  38. 38. 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
  39. 39. 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
  40. 40. 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.)
  41. 41. 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
  42. 42. 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
  43. 43. 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
  44. 44. 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
  45. 45. What makes an individual adopt healthier habits? Motivations to change The Scope of Health IT Andrew Oram Individuals (patients/consumers)
  46. 46. 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
  47. 47. Individuals require continuous support from clinicians and/or peers Motivations to change The Scope of Health IT Andrew Oram
  48. 48. 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
  49. 49. Clinicians' priorities are driven by payers Motivations to change The Scope of Health IT Andrew Oram
  50. 50. Individuals' priorities are also influenced by payers Motivations to change The Scope of Health IT Andrew Oram
  51. 51. 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
  52. 52. Payers need research and analytics to set payments Motivations to change The Scope of Health IT Andrew Oram
  53. 53. 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
  54. 54. Researchers' funding and agendas are controlled by government Motivations to change The Scope of Health IT Andrew Oram
  55. 55. Government also makes payments and regulates payers Motivations to change The Scope of Health IT Andrew Oram
  56. 56. 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
  57. 57. Governments respond to pressure from the public Motivations to change The Scope of Health IT Andrew Oram
  58. 58. 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
  59. 59. 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
  60. 60. 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
  61. 61. 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
  62. 62. 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
  63. 63. 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)
  64. 64. 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.
  65. 65. Contact The Scope of Health IT Andrew Oram Email: andyo@oreilly.com Twitter: @praxagora Google+: https://plus.google.com/+AndyOram/ LinkedIn: http://www.linkedin.com/in/andyo/ SlideShare: http://www.slideshare.net/andyoram

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