The Adoption of Personal Health Records Khaled El Emam, CHEO RI
www.ehealthinformation.ca
Why PHRs for Consumers ? <ul><li>Consumers want to: </li></ul><ul><ul><li>be more involved in their healthcare </li></ul><...
Standalone PHRs <ul><li>They can be paper or electronic; we are only interested in electronic </li></ul><ul><li>Can be a P...
<ul><li>Data is input by the consumer: </li></ul><ul><ul><li>manually </li></ul></ul><ul><ul><li>load/import external file...
<ul><li>For providers to rely on copies of this data it must be reliable and accurate </li></ul><ul><li>Giving providers a...
<ul><li>It is unlikely that consumers, except the most highly motivated, will keep their data up-to-date </li></ul><ul><li...
<ul><li>Data entered by/through consumers into PHRs are not always reliable: </li></ul><ul><ul><li>Consumers can accuratel...
<ul><li>Patient education information </li></ul><ul><li>Patient outcomes (self reported, such as reaction to drugs and whe...
Payments - Consumers <ul><li>One time fees:$20-$50 (~50%); $50-$100 (~25%) </li></ul><ul><li>Yearly fees: <$50 (57%); $50-...
Consumer Adoption Considerations <ul><li>Consumers do not want to switch among many standalone PHRs to satisfy their needs...
Tethered PHRs <ul><li>The PHR is connected to an existing EMR system or an existing claims database that pre-populates it ...
Most Common Functions <ul><li>Patient education information </li></ul><ul><li>Appointment scheduling </li></ul><ul><li>Pat...
Payments <ul><li>Insurers and employers are motivated to pay for PHRs to control costs by encouraging healthy behaviors an...
Payments by Consumers <ul><li>In general population (US), ~36% willing to pay for e-consultation </li></ul><ul><li>Willing...
Characteristics of Adopters <ul><li>Female </li></ul><ul><li>Concerned about their health </li></ul><ul><li>Did not have a...
Factors Affecting Adoption <ul><li>Consumers: </li></ul><ul><ul><li>Expectation of benefits </li></ul></ul><ul><ul><li>Bei...
Concerns <ul><li>Physician liability </li></ul><ul><li>Can consumers control what is visible in their record and to whom (...
Interconnected PHRs <ul><li>Connect to multiple EMRs allowing the consumer to view and possibly manipulate data from all o...
Shared PHRs <ul><li>Allow the sharing of information among the consumers themselves </li></ul><ul><li>Either in an aggrega...
Privacy Policies of PHR Systems - I <ul><li>Only 3% of policies stated that explicit consumer consent was necessary prior ...
Privacy Policies of PHR Systems - II <ul><li>No privacy policies named the vendor’s existing data partners, third parties,...
Business Models <ul><li>Free (if tethered to provider EMR) </li></ul><ul><li>Advertising </li></ul><ul><li>Sell the data <...
Law of Attrition <ul><li>Pilot studies and PHR interventions that were evaluated showed a steady attrition rate of consume...
e-Health Literacy <ul><li>Traditional literacy (reading, writing, numeracy): 4/10 Canadians have low literacy; a quarter o...
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The Adoption of Personal Health Records by Consumers

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The Adoption of Personal Health Records by Consumers

  1. 1. The Adoption of Personal Health Records Khaled El Emam, CHEO RI
  2. 2. www.ehealthinformation.ca
  3. 3. Why PHRs for Consumers ? <ul><li>Consumers want to: </li></ul><ul><ul><li>be more involved in their healthcare </li></ul></ul><ul><ul><li>understand their condition(s) better </li></ul></ul><ul><ul><li>see what providers say about them (mistrust) </li></ul></ul><ul><ul><li>look for trends or patterns in their health history </li></ul></ul><ul><ul><li>jog memory about their medical history </li></ul></ul>
  4. 4. Standalone PHRs <ul><li>They can be paper or electronic; we are only interested in electronic </li></ul><ul><li>Can be a PC application or over the Internet </li></ul><ul><li>The vast majority of PHRs are standalone </li></ul>
  5. 5. <ul><li>Data is input by the consumer: </li></ul><ul><ul><li>manually </li></ul></ul><ul><ul><li>load/import external files </li></ul></ul><ul><ul><li>scanned documents </li></ul></ul><ul><ul><li>medical, home, or consumer electronic devices </li></ul></ul>Data Input
  6. 6. <ul><li>For providers to rely on copies of this data it must be reliable and accurate </li></ul><ul><li>Giving providers a password to access a consumer’s data can get overwhelming if many patients use different PHRs and give the same provider their account info </li></ul>Data Output
  7. 7. <ul><li>It is unlikely that consumers, except the most highly motivated, will keep their data up-to-date </li></ul><ul><li>Motivated consumers have had certain life events (e.g., pregnancy or menopause) or certain health events (e.g., injury or diagnosis with a chronic disease) </li></ul>Data Quality - I
  8. 8. <ul><li>Data entered by/through consumers into PHRs are not always reliable: </li></ul><ul><ul><li>Consumers can accurately record some values, such as height, weight, and temperature measured by a thermometer </li></ul></ul><ul><ul><li>Consumers can accurately report if they‘ve had a test, but not its value (e.g., cholesterol or HbA1c) </li></ul></ul><ul><ul><li>They are inaccurate when reporting their vaccinations </li></ul></ul><ul><ul><li>Data coming from devices can be quite unreliable; questions about calibration, proper use, and quality of consumer devices </li></ul></ul>Data Quality - II
  9. 9. <ul><li>Patient education information </li></ul><ul><li>Patient outcomes (self reported, such as reaction to drugs and whether or not the patient’s condition is improving) </li></ul><ul><li>Patient reminders </li></ul>Most Common Functions
  10. 10. Payments - Consumers <ul><li>One time fees:$20-$50 (~50%); $50-$100 (~25%) </li></ul><ul><li>Yearly fees: <$50 (57%); $50-$100 (~30%) </li></ul><ul><li>This pricing suggests that retention rates are not very high because there is no price differential between yearly and one-time fees </li></ul>
  11. 11. Consumer Adoption Considerations <ul><li>Consumers do not want to switch among many standalone PHRs to satisfy their needs; therefore these need to be quite comprehensive </li></ul><ul><li>With large PHR vendor turnover, what happens to the data if the data is in the cloud and a vendor goes out of business ? </li></ul><ul><li>Standalone PHRs are independent of provider, insurer, and employer; therefore do not have to switch if consumer changes job, provider, or insurer </li></ul><ul><li>Consumers have total control over their data (except, if the data is on the cloud) </li></ul>
  12. 12. Tethered PHRs <ul><li>The PHR is connected to an existing EMR system or an existing claims database that pre-populates it </li></ul><ul><li>Allow read-only or read/write access to the medical record </li></ul><ul><li>Consumers want to (common top three): </li></ul><ul><ul><li>view their lab results </li></ul></ul><ul><ul><li>view physician’s notes </li></ul></ul><ul><ul><li>communicate with their provider </li></ul></ul><ul><li>Consumers changing data: </li></ul><ul><ul><li>Edit their registration information </li></ul></ul><ul><ul><li>Annotate the clinical information </li></ul></ul>
  13. 13. Most Common Functions <ul><li>Patient education information </li></ul><ul><li>Appointment scheduling </li></ul><ul><li>Patient reminders </li></ul><ul><li>Prescription refills </li></ul><ul><li>Many do not (yet) offer on-line communication capabilities with the provider </li></ul>
  14. 14. Payments <ul><li>Insurers and employers are motivated to pay for PHRs to control costs by encouraging healthy behaviors and effectively managing chronic diseases; raises concerns about portability </li></ul><ul><li>Providers are motivated to pay as a marketing tool to improve patient retention </li></ul><ul><li>A major issue is payment of physicians for e-consultations (some insurance companies are starting to pay $25-$30 per consultation in US) </li></ul>
  15. 15. Payments by Consumers <ul><li>In general population (US), ~36% willing to pay for e-consultation </li></ul><ul><li>Willingness to pay for online services: </li></ul><ul><ul><li>Email with their doctor (67%) </li></ul></ul><ul><ul><li>Medication refills (62%) </li></ul></ul><ul><ul><li>Viewing their records (60%) </li></ul></ul><ul><ul><li>Appointment request (57%) </li></ul></ul><ul><li>~47% patients willing to pay $10 per year for on-line access, with a median amount of $20 </li></ul>
  16. 16. Characteristics of Adopters <ul><li>Female </li></ul><ul><li>Concerned about their health </li></ul><ul><li>Did not have a trusting relationship with their physician </li></ul><ul><li>Concerned about errors </li></ul><ul><li>Least concerned about privacy (sale and secondary use of data without consent) </li></ul>
  17. 17. Factors Affecting Adoption <ul><li>Consumers: </li></ul><ul><ul><li>Expectation of benefits </li></ul></ul><ul><ul><li>Being able to control access to their records </li></ul></ul><ul><ul><li>Ability to take their records off the PHR later on if they wanted to </li></ul></ul><ul><ul><li>Want to be able to view the list of who has access and has accessed their record </li></ul></ul><ul><li>Providers: </li></ul><ul><ul><li>Cost </li></ul></ul><ul><ul><li>Physician buy-in </li></ul></ul>
  18. 18. Concerns <ul><li>Physician liability </li></ul><ul><li>Can consumers control what is visible in their record and to whom (e-consent management) ? </li></ul><ul><li>Sharing & delegating access to data </li></ul><ul><li>Effect of patient access on record keeping practices of providers </li></ul><ul><li>Processes for responding to requests for changing the record </li></ul><ul><li>e-health literacy of consumers </li></ul><ul><li>Portability of PHRs </li></ul>
  19. 19. Interconnected PHRs <ul><li>Connect to multiple EMRs allowing the consumer to view and possibly manipulate data from all of the consumers’ providers and multiple data sources </li></ul><ul><li>This information can potentially be useful for providers as well; but need to indicate the data source for providers to determine how much they can trust the data </li></ul>
  20. 20. Shared PHRs <ul><li>Allow the sharing of information among the consumers themselves </li></ul><ul><li>Either in an aggregated way or at an individual level </li></ul><ul><li>This can help to find other patients with similar experiences: </li></ul><ul><ul><li>Asking for advice in a targeted way </li></ul></ul><ul><ul><li>Offering advice to those with a specific symptom </li></ul></ul><ul><ul><li>Fostering relationships based on shared attributes </li></ul></ul>
  21. 21. Privacy Policies of PHR Systems - I <ul><li>Only 3% of policies stated that explicit consumer consent was necessary prior to the vendor sharing data </li></ul><ul><li>Only 7% described the ultimate disposition of data should the vendor be sold or go out of business </li></ul><ul><li>Only 3% described their policy about de-activated accounts </li></ul><ul><li>30% addresses the secondary use of data by business associates </li></ul>
  22. 22. Privacy Policies of PHR Systems - II <ul><li>No privacy policies named the vendor’s existing data partners, third parties, or other secondary users of data </li></ul><ul><li>No privacy policy provides for a notice to be sent to the consumers when identifiable or de-identified data are sold or transferred to a third party </li></ul>
  23. 23. Business Models <ul><li>Free (if tethered to provider EMR) </li></ul><ul><li>Advertising </li></ul><ul><li>Sell the data </li></ul><ul><li>Sponsors pay </li></ul><ul><li>Consumers pay </li></ul><ul><li>Unknown </li></ul>
  24. 24. Law of Attrition <ul><li>Pilot studies and PHR interventions that were evaluated showed a steady attrition rate of consumers: </li></ul><ul><ul><li>stopped using the system </li></ul></ul><ul><ul><li>frequency of use declines </li></ul></ul><ul><li>The steady state contained a very small percentage of the initial user-base </li></ul>
  25. 25. e-Health Literacy <ul><li>Traditional literacy (reading, writing, numeracy): 4/10 Canadians have low literacy; a quarter of US 15 year olds add low numerical literacy </li></ul><ul><li>Media literacy (think critically and to act based on information from media-based messages) </li></ul><ul><li>Information literacy (knowing how information is organized and where to find it; connecting info) </li></ul><ul><li>Computer literacy </li></ul><ul><li>Science literacy </li></ul><ul><li>Health literacy </li></ul>

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