stephen at melbpc.org.au stephen at melbpc.org.au
Tue May 19 21:39:49 AEST 2009

Medical Records:  Internet-savvy Consumers Will Trade Some Privacy In 
Order To Gain Transparency, Full Access To Medical Records

ScienceDaily  www.sciencedaily.com/releases/2009/05/090518101919.htm

As President Barack Obama calls for streamlining heath care by fully 
converting to electronic medical records, and, as Congress prepares to 
debate issues of patient privacy, one question has largely gone unasked: 

What do patients want?

A qualitative study led by a research team at Beth Israel Deaconess 
Medical Center (BIDMC) helps answer that question. 

Reported in the June 2009 issue of the Journal of General Internal 
Medicine (JGIM), the findings provide key insights into consumer 
preferences, suggesting that, patients want full access to all of their 
medical records, are willing to make some privacy concessions in the 
interest of making their medical records completely transparent, and 
that, going forward, fully expect that computers will play a major role 
in their medical care, even substituting for face-to-face doctor visits.

"We set out to study patient attitudes toward electronic personal health 
records and other emerging and future electronic health information 
technologies," explains the study's lead author Jan Walker, RN, MBA, 
Instructor in Medicine in the Division of General Medicine and Primary 
Care at BIDMC and Harvard Medical School. 

"And we learned that, for the most part, patients are very comfortable 
with the idea of computers playing a central role in their care." 

In fact, she adds, patients said they not only want computers to bring 
them customized medical information, they fully expect that in the future 
they will be able to rely on electronic technology for many routine 
medical issues.

"Patients know how busy their doctors are and they want to reserve us for 
what they really need us for – treating serious illness and conditions," 
adds senior author Tom Delbanco, MD, the Richard and Florence Koplow-
James Tullis Professor of General Medicine and Primary Care at Harvard 
Medical School and BIDMC. 

"They may be more than happy to rely on computer protocols and 'faceless 
doctors' to help them manage garden-variety medical problems."

Focus groups were held in four cities ..

"The discussions showed that, for the most part, consumers want computers 
to take into account their personal profiles in order to bring them 
customized information and advice," explains Walker. 

"They also expect that technologies will 'watch' over them, monitoring 
their health and giving them real-time feedback, including communicating 
with clinicians when needed. Participants also said they expect computers 
to act as 'personal coaches,' and to foster self care."

Strikingly, she adds, privacy of health care information was of less 
importance to the groups than might be expected. 

"It seems that as the population ages and finds itself facing more 
illness and serious medical conditions, privacy of health information 
becomes much less important to patients than it is when they are 
healthy," she notes. 

"Patients are willing to trade some privacy in order to have records 
fully available in emergency settings and available to new caregivers as 
well as to multiple clinicians."

New health technologies offer patients online access to parts of 
electronic medical records (EMRs), options for maintaining their personal 
histories, and support for day-to-day management of chronic illness, the 
authors note. 

But when it comes to the future design and utility of these and other 
elements of care, teams of software engineers, graphic artists and 
clinicians rarely solicit patient perspectives.

"The patient's view is critical," adds Delbanco. 

"We health care professionals think we know what it is, but we're often 
too arrogant to ask. We want our healthcare system to be as patient-
centered as possible, and patients have broad and deep experience with 
technology in other sectors of their lives."

Study coauthors include David K. Ahern, PhD, of Brigham and Women's 
Hospital and Harvard Medical School and Lan Le, MPH, of the Massachusetts 
Institute of Technology.



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