[Med-privacy] PHR services

Fri, 29 Apr 2005 11:13:28 -0700

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Health record services a privacy risk

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<bold><fontfamily><param>Times</param><color><param>0000,0000,6666</param><bigger><bigger><bigger><bigger><bigger><bigger>Health
record services a privacy risk</bigger></bigger></bigger></bigger></bigger></bigger></color><bigger><bigger><bigger><bigger><bigger><bigger>

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By Dee Ann Divis
UNITED PRESS INTERNATIONAL

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<bold><fontfamily><param>Times</param><bigger><bigger><bigger><bigger><bigger><bigger>

</bigger></bigger></bigger></bigger></bigger></bigger></fontfamily></bold><fontfamily><param>Helvetica</param><color><param>5F5F,7979,A3A3</param>By
Dee Ann Divis</color>

<bold><color><param>5F5F,7979,A3A3</param><smaller>UNITED PRESS
INTERNATIONAL</smaller></color><smaller>

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  WASHINGTON, DC, Apr. 27 (UPI) -- Medical records experts worry people 
will begin using online services to store and manage their health 
records -- services that may not be covered by federal medical 
confidentiality laws -- without fully understanding they could be 
giving up their privacy.

  Companies are expected soon to begin offering the public personal 
health record or PHR services, allowing individuals to maintain copies 
of their health records online, regardless of which doctor they may be 
using.

  Such services could make it easier to obtain records in an emergency, 
and they could make life simpler for busy families that move frequently 
or face complicated medical situations, such as several young children 
on different vaccination schedules, or an elderly parent on multiple 
medications.

  Data from such records also could be very valuable to pharmaceutical 
companies seeking to market new products, to researchers studying 
health trends or to public health officials monitoring the population 
for spikes in illness.

  Officials are concerned, however, that data submitted to private PHR 
services could be packaged and sold commercially without appropriate 
privacy precautions or the informed permission of those submitting the 
data. Third-party services are not necessarily covered by the Health 
Insurance Portability and Accountability Act of 1996, which, among 
other provisions, limits the sharing of health data without the 
patient's express permission.

  "Because of the HIPPA loophole, third parties, whether they are profit 
or non-profit, are not covered by HIPPA," said Paul Tang, chief medical 
information officer at the Palo Alto Medical Foundation in California. 
"In other words, consumers and patients do not have (legal recourse 
and) I think that is a real concern."

  Tang spoke at a meeting of the National Committee on Vital and Health 
Statistics Tuesday in Washington. The group, of which Tang is a member, 
is sponsored by the Department of Health and Human Services and is 
working on PHR recommendations for HHS Secretary Michael Leavitt.

  Most committee members think the loophole could allow creation of 
services that entice consumers with benefits and free services, but do 
not disclose that the company's revenue comes from selling the data.

  "Increasingly, this concept of information banking -- the value of 
data -- I think that that is going to be explosive and we've not really 
seen the commercial side of it," said Mary Jo Deering, the committee's 
lead staffer.

  "I am very much afraid that privacy and security requirements are 
being circumvented by some of the (business) models," said Jeff Blair, 
another committee member and vice president of the Medical Records 
Institute in Albuquerque, N.M. "The piece that I've started to notice 
is this banner of being for free and not disclosing where the funding 
is coming from and what is happening with that data."

  A lack of disclosure could undermine public trust and thereby the 
benefits of PHR, Blair said, at the same time the federal government is 
supporting the private data services as a way to save money and 
emphasize preventative medicine.

  "This is going to be very much consumer driven," said Houston, who is 
the privacy officer at the University of Pittsburgh Medical Center. 
"The consumers are going to ... decide on a case-by-case basis whether 
they value the privacy of their records (and) the protections those 
organization put in place against the functionality those organizations 
are willing to provide."

  Services rich with features and benefits may win out, he added.

  Some of the incentives such organizations might offer to entice users 
and their data include free broad-band access and reduced prices on 
pharmaceuticals.

  "I think a lot patients are going to say, 'Hey, if this is going to 
save me some dollars and improve my care in exchange I am willing to 
consider the privacy implications,'" Houston said. "That is a very 
personal decision."

  Several committee members agreed consumers should be able to choose. 
The concern most often expressed was clients of the services should be 
fully informed about their rights and whether their information would 
be sold.

  "There is a lot of good in PHR services and many offer tremendous 
value," Blair told United Press International, "(but) any of these new 
offerings needs to be up front in disclosing who has access to that 
information and under what conditions."

  If PHR services do not disclose their source of funding or where the 
information is going consumers "can't make an informed decision," said 
a senior government staffer knowledgeable of the issue, but requesting 
anonymity. "If it is down in four-point type buried in five pages of 
legalese ... is it a really valid informed choice?"

  --

  Dee Ann Divis is UPI's Senior Science & Technology Editor. E-mail: 
ddivis@upi.com

Copyright 2005 United Press International

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WASHINGTON, DC, Apr. 27 (UPI) -- Medical records experts worry people
will begin using online services to store and manage their health
records -- services that may not be covered by federal medical
confidentiality laws -- without fully understanding they could be
giving up their privacy.

 Companies are expected soon to begin offering the public personal
health record or PHR services, allowing individuals to maintain copies
of their health records online, regardless of which doctor they may be
using.

 Such services could make it easier to obtain records in an emergency,
and they could make life simpler for busy families that move
frequently or face complicated medical situations, such as several
young children on different vaccination schedules, or an elderly
parent on multiple medications.

 Data from such records also could be very valuable to pharmaceutical
companies seeking to market new products, to researchers studying
health trends or to public health officials monitoring the population
for spikes in illness.

 Officials are concerned, however, that data submitted to private PHR
services could be packaged and sold commercially without appropriate
privacy precautions or the informed permission of those submitting the
data. Third-party services are not necessarily covered by the Health
Insurance Portability and Accountability Act of 1996, which, among
other provisions, limits the sharing of health data without the
patient's express permission.

 "Because of the HIPPA loophole, third parties, whether they are
profit or non-profit, are not covered by HIPPA," said Paul Tang, chief
medical information officer at the Palo Alto Medical Foundation in
California. "In other words, consumers and patients do not have (legal
recourse and) I think that is a real concern."

 Tang spoke at a meeting of the National Committee on Vital and Health
Statistics Tuesday in Washington. The group, of which Tang is a
member, is sponsored by the Department of Health and Human Services
and is working on PHR recommendations for HHS Secretary Michael
Leavitt.

 Most committee members think the loophole could allow creation of
services that entice consumers with benefits and free services, but do
not disclose that the company's revenue comes from selling the data.

 "Increasingly, this concept of information banking -- the value of
data -- I think that that is going to be explosive and we've not
really seen the commercial side of it," said Mary Jo Deering, the
committee's lead staffer.

 "I am very much afraid that privacy and security requirements are
being circumvented by some of the (business) models," said Jeff Blair,
another committee member and vice president of the Medical Records
Institute in Albuquerque, N.M. "The piece that I've started to notice
is this banner of being for free and not disclosing where the funding
is coming from and what is happening with that data."

 A lack of disclosure could undermine public trust and thereby the
benefits of PHR, Blair said, at the same time the federal government
is supporting the private data services as a way to save money and
emphasize preventative medicine.

 "This is going to be very much consumer driven," said Houston, who is
the privacy officer at the University of Pittsburgh Medical Center.
"The consumers are going to ... decide on a case-by-case basis whether
they value the privacy of their records (and) the protections those
organization put in place against the functionality those
organizations are willing to provide."

 Services rich with features and benefits may win out, he added.

 Some of the incentives such organizations might offer to entice users
and their data include free broad-band access and reduced prices on
pharmaceuticals.

 "I think a lot patients are going to say, 'Hey, if this is going to
save me some dollars and improve my care in exchange I am willing to
consider the privacy implications,'" Houston said. "That is a very
personal decision."

 Several committee members agreed consumers should be able to choose.
The concern most often expressed was clients of the services should be
fully informed about their rights and whether their information would
be sold.

 "There is a lot of good in PHR services and many offer tremendous
value," Blair told United Press International, "(but) any of these new
offerings needs to be up front in disclosing who has access to that
information and under what conditions."

 If PHR services do not disclose their source of funding or where the
information is going consumers "can't make an informed decision," said
a senior government staffer knowledgeable of the issue, but requesting
anonymity. "If it is down in four-point type buried in five pages of
legalese ... is it a really valid informed choice?"

 --

 Dee Ann Divis is UPI's Senior Science & Technology Editor. E-mail:
ddivis@upi.com

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</x-tad-bigger></bigger><fontfamily><param>Helvetica</param><x-tad-smaller>Copyright
2005 United Press International

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