The Adoption of Personal Health Records Khaled El Emam, CHEO RI

www.ehealthinformation.ca

Why PHRs for Consumers ? Consumers want to: be more involved in their healthcare understand their condition(s) better see what providers say about them (mistrust) look for trends or patterns in their health history jog memory about their medical history

Consumers want to:

be more involved in their healthcare

understand their condition(s) better

see what providers say about them (mistrust)

look for trends or patterns in their health history

jog memory about their medical history

Standalone PHRs They can be paper or electronic; we are only interested in electronic Can be a PC application or over the Internet The vast majority of PHRs are standalone

They can be paper or electronic; we are only interested in electronic

Can be a PC application or over the Internet

The vast majority of PHRs are standalone

Data is input by the consumer: manually load/import external files scanned documents medical, home, or consumer electronic devices Data Input

Data is input by the consumer:

manually

load/import external files

scanned documents

medical, home, or consumer electronic devices

For providers to rely on copies of this data it must be reliable and accurate 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 Data Output

For providers to rely on copies of this data it must be reliable and accurate

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

It is unlikely that consumers, except the most highly motivated, will keep their data up-to-date 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) Data Quality - I

It is unlikely that consumers, except the most highly motivated, will keep their data up-to-date

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)

Data entered by/through consumers into PHRs are not always reliable: Consumers can accurately record some values, such as height, weight, and temperature measured by a thermometer Consumers can accurately report if they‘ve had a test, but not its value (e.g., cholesterol or HbA1c) They are inaccurate when reporting their vaccinations Data coming from devices can be quite unreliable; questions about calibration, proper use, and quality of consumer devices Data Quality - II

Data entered by/through consumers into PHRs are not always reliable:

Consumers can accurately record some values, such as height, weight, and temperature measured by a thermometer

Consumers can accurately report if they‘ve had a test, but not its value (e.g., cholesterol or HbA1c)

They are inaccurate when reporting their vaccinations

Data coming from devices can be quite unreliable; questions about calibration, proper use, and quality of consumer devices

Patient education information Patient outcomes (self reported, such as reaction to drugs and whether or not the patient’s condition is improving) Patient reminders Most Common Functions

Patient education information

Patient outcomes (self reported, such as reaction to drugs and whether or not the patient’s condition is improving)

Patient reminders

Payments - Consumers One time fees:$20-$50 (~50%); $50-$100 (~25%) Yearly fees: <$50 (57%); $50-$100 (~30%) This pricing suggests that retention rates are not very high because there is no price differential between yearly and one-time fees

One time fees:$20-$50 (~50%); $50-$100 (~25%)

Yearly fees: <$50 (57%); $50-$100 (~30%)

This pricing suggests that retention rates are not very high because there is no price differential between yearly and one-time fees

Consumer Adoption Considerations Consumers do not want to switch among many standalone PHRs to satisfy their needs; therefore these need to be quite comprehensive With large PHR vendor turnover, what happens to the data if the data is in the cloud and a vendor goes out of business ? Standalone PHRs are independent of provider, insurer, and employer; therefore do not have to switch if consumer changes job, provider, or insurer Consumers have total control over their data (except, if the data is on the cloud)

Consumers do not want to switch among many standalone PHRs to satisfy their needs; therefore these need to be quite comprehensive

With large PHR vendor turnover, what happens to the data if the data is in the cloud and a vendor goes out of business ?

Standalone PHRs are independent of provider, insurer, and employer; therefore do not have to switch if consumer changes job, provider, or insurer

Consumers have total control over their data (except, if the data is on the cloud)

Tethered PHRs The PHR is connected to an existing EMR system or an existing claims database that pre-populates it Allow read-only or read/write access to the medical record Consumers want to (common top three): view their lab results view physician’s notes communicate with their provider Consumers changing data: Edit their registration information Annotate the clinical information

The PHR is connected to an existing EMR system or an existing claims database that pre-populates it

Allow read-only or read/write access to the medical record

Consumers want to (common top three):

view their lab results

view physician’s notes

communicate with their provider

Consumers changing data:

Edit their registration information

Annotate the clinical information

Most Common Functions Patient education information Appointment scheduling Patient reminders Prescription refills Many do not (yet) offer on-line communication capabilities with the provider

Patient education information

Appointment scheduling

Patient reminders

Prescription refills

Many do not (yet) offer on-line communication capabilities with the provider

Payments 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 Providers are motivated to pay as a marketing tool to improve patient retention A major issue is payment of physicians for e-consultations (some insurance companies are starting to pay $25-$30 per consultation in US)

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

Providers are motivated to pay as a marketing tool to improve patient retention

A major issue is payment of physicians for e-consultations (some insurance companies are starting to pay $25-$30 per consultation in US)

Payments by Consumers In general population (US), ~36% willing to pay for e-consultation Willingness to pay for online services: Email with their doctor (67%) Medication refills (62%) Viewing their records (60%) Appointment request (57%) ~47% patients willing to pay $10 per year for on-line access, with a median amount of $20

In general population (US), ~36% willing to pay for e-consultation

Willingness to pay for online services:

Email with their doctor (67%)

Medication refills (62%)

Viewing their records (60%)

Appointment request (57%)

~47% patients willing to pay $10 per year for on-line access, with a median amount of $20

Characteristics of Adopters Female Concerned about their health Did not have a trusting relationship with their physician Concerned about errors Least concerned about privacy (sale and secondary use of data without consent)

Female

Concerned about their health

Did not have a trusting relationship with their physician

Concerned about errors

Least concerned about privacy (sale and secondary use of data without consent)

Factors Affecting Adoption Consumers: Expectation of benefits Being able to control access to their records Ability to take their records off the PHR later on if they wanted to Want to be able to view the list of who has access and has accessed their record Providers: Cost Physician buy-in

Consumers:

Expectation of benefits

Being able to control access to their records

Ability to take their records off the PHR later on if they wanted to

Want to be able to view the list of who has access and has accessed their record

Providers:

Cost

Physician buy-in

Concerns Physician liability Can consumers control what is visible in their record and to whom (e-consent management) ? Sharing & delegating access to data Effect of patient access on record keeping practices of providers Processes for responding to requests for changing the record e-health literacy of consumers Portability of PHRs

Physician liability

Can consumers control what is visible in their record and to whom (e-consent management) ?

Sharing & delegating access to data

Effect of patient access on record keeping practices of providers

Processes for responding to requests for changing the record

e-health literacy of consumers

Portability of PHRs

Interconnected PHRs Connect to multiple EMRs allowing the consumer to view and possibly manipulate data from all of the consumers’ providers and multiple data sources 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

Connect to multiple EMRs allowing the consumer to view and possibly manipulate data from all of the consumers’ providers and multiple data sources

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

Shared PHRs Allow the sharing of information among the consumers themselves Either in an aggregated way or at an individual level This can help to find other patients with similar experiences: Asking for advice in a targeted way Offering advice to those with a specific symptom Fostering relationships based on shared attributes

Allow the sharing of information among the consumers themselves

Either in an aggregated way or at an individual level

This can help to find other patients with similar experiences:

Asking for advice in a targeted way

Offering advice to those with a specific symptom

Fostering relationships based on shared attributes

Privacy Policies of PHR Systems - I Only 3% of policies stated that explicit consumer consent was necessary prior to the vendor sharing data Only 7% described the ultimate disposition of data should the vendor be sold or go out of business Only 3% described their policy about de-activated accounts 30% addresses the secondary use of data by business associates

Only 3% of policies stated that explicit consumer consent was necessary prior to the vendor sharing data

Only 7% described the ultimate disposition of data should the vendor be sold or go out of business

Only 3% described their policy about de-activated accounts

30% addresses the secondary use of data by business associates

Privacy Policies of PHR Systems - II No privacy policies named the vendor’s existing data partners, third parties, or other secondary users of data 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

No privacy policies named the vendor’s existing data partners, third parties, or other secondary users of data

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

Business Models Free (if tethered to provider EMR) Advertising Sell the data Sponsors pay Consumers pay Unknown

Free (if tethered to provider EMR)

Advertising

Sell the data

Sponsors pay

Consumers pay

Unknown

Law of Attrition Pilot studies and PHR interventions that were evaluated showed a steady attrition rate of consumers: stopped using the system frequency of use declines The steady state contained a very small percentage of the initial user-base

Pilot studies and PHR interventions that were evaluated showed a steady attrition rate of consumers:

stopped using the system

frequency of use declines

The steady state contained a very small percentage of the initial user-base

e-Health Literacy Traditional literacy (reading, writing, numeracy): 4/10 Canadians have low literacy; a quarter of US 15 year olds add low numerical literacy Media literacy (think critically and to act based on information from media-based messages) Information literacy (knowing how information is organized and where to find it; connecting info) Computer literacy Science literacy Health literacy

Traditional literacy (reading, writing, numeracy): 4/10 Canadians have low literacy; a quarter of US 15 year olds add low numerical literacy

Media literacy (think critically and to act based on information from media-based messages)

Information literacy (knowing how information is organized and where to find it; connecting info)

Computer literacy

Science literacy

Health literacy