|
When Alison Rein resigned as one of two consumer representatives on the 23-member board of the Healthcare Information Technology Standards Panel (HITSP) last year, it took the staff more than two months to issue a public notice and solicit nominations for her replacement.
Rein said such laxity is not unusual. Consumers are often overlooked or even ignored in the push to develop policies and organizations to support health IT, she said.
Both federal and state organizations are remiss, policy watchers say. For example, when state organizations working on a project funded by the federal Agency for Healthcare Research and Quality were required to include consumers in the initiative, several groups couldn’t find interested and knowledgeable consumers while others spent an inordinate amount of time deciding who should fill those seats.
“It’s really been frustrating” for consumer advocates and those trying to include them in policy-making, said Rein, a senior associate at the nonprofit consulting firm AcademyHealth in Washington.
David Lansky, the other consumer representative on the HITSP board, said he doesn’t know of many health IT organizations at the federal, state or local level that have succeeded in involving consumers in a meaningful way, even in quasi-public groups.
Are such omissions simply an oversight, or do groups bypass consumers because their involvement is not essential to health IT planning efforts? The answer lies in the market chaos of building an emerging health IT network, the tendency of players with money to call the shots and the sheer complexity of the task at hand.
“There are a lot of good reasons for [involving consumers], both substantive and political,” said Lansky, senior director of the health program at the Markle Foundation, a nonprofit organization that promotes the use of technology to address public needs.
Health information exchanges (HIEs) work with sensitive information, he said, so involving patients is a good way to ensure that projects address potential privacy concerns.
“If something goes wrong with a data spill and they haven’t done the best they can to prevent it and mitigate it, then they’re going to be at risk for public backlash if they don’t have community leaders and consumers involved from the outset,” Lansky said.
Consumer involvement can also help ensure that health IT serves the broadest possible interests, consumer advocates say. That’s a concern because many of the people involved in health IT are technology specialists, health care executives and young doctors who might not have hands-on experience with patient care.
“They just don’t think the same way” that caregivers do, said Joann Hasse, the consumer representative on the board of the Delaware Health Information Network. “They’re looking at the technical problems and not necessarily the people problems.”
Risks to developers
However, builders of large health IT systems overlook consumers’ interests at their own risk, consumer advocates say.
“There’s an enormous amount of public dollar investment that’s going to be needed to support most of these [HIEs], and the taxpayers aren’t going to buy into it if it’s not something that they trust or that they think is worth doing,” said Deven McGraw, chief operating officer at the National Partnership for Women and Families.
William Vaughan, a senior health policy analyst at Consumers Union, added that people will not allow their health records to be exchanged via an HIE if they have concerns about how their records will be used or whether they will remain private.
And a decline in consumer participation will take a toll on the value of the remaining data. “The more people who opt out, the less…quality data we have the less we understand what’s happening in fields like mental health and sexual diseases, and so forth,” Vaughan said.
Mainly, people want a say in how their information is used, he added.
Political consequences could also await those who sidestep consumers. “A state senator who is alarmed or a secretary of health and human services for the state who is alarmed — they can certainly be quite potent,” said John Glaser, vice president and chief information officer at Partners HealthCare System in Boston. “You are in some peril politically if you ignore the consumers or behave in a way that doesn’t hold them in high regard.”
Money talks
If the value of public involvement in health IT is obvious, why do developers so often overlook patients? The answer has a lot to do with the mechanics of launching such complicated projects, health IT executives say.
HIEs often start with a grant from a state or federal government agency. In many cases, that agency insists that members of the public be involved in the project as a way of protecting consumers’ interests. But increasingly, business necessities overrule those concerns.
“Many of these [HIEs] have been initiated by provider organizations, and they tend to see this as a business-to-business infrastructure” through which they exchange information with one another, Lansky said.
A recent survey by the eHealth Initiative supports that view. The organization found that hospitals replaced government agencies as the leading source of start-up funding for HIEs in 2007.
“Separating what’s a commercial interest from what’s a public interest is part of where this issue surfaces,” Lansky said.
The public interest usually lags behind the interests of those with the money, experienced developers say.
“When you have people at the table initially, it is those who you think probably have a vested interest in making this happen because it’s going to solve a problem for them,” Glaser said. “So it tends not to be the consumers [who are involved]. It tends to be the providers and the plans because you need a fair amount of money out of them and because they have to really come to grips” with the implementation issues. In addition, the plans and providers have the data that will be exchanged.
The optimum time to include consumers might be when the HIE is operational, Glaser added. “In some ways, it’s sort of a second-stage effort” that happens when it’s time to consider long-term policy issues, he said.
Who is a consumer?
Even when an HIE is committed to involving consumers, the practicalities of participation are not simple.
First comes the question of who is a consumer. Is it the patient? How about those who care for invalid family members? Should older members of the community be represented because they are more likely to have to deal with the health care system?
When HIE leaders look for health consumers, they often turn to organizations interested in specific diseases or conditions, such as cancer or Alzheimer’s disease. But the focus of such groups might be too narrow to represent health consumers’ wide-ranging concerns.
“The mental health organizations are going to see the issue differently than, say, the cancer organizations,” McGraw said. “So who do you have at the table? You can’t have everyone.”
The technical language of HIEs is another barrier to consumer involvement. Although advisory committees don’t typically focus on the technology involved, policy discussions related to the authentication of network users or probabilistic matching of patients with their records can get technical in a hurry — or at least technical-sounding.
“We’re dealing with a topic that is at best opaque and for most consumers is downright muddy,” said Devore Culver, executive director of Maine’s HealthInfoNet HIE.
“The acronyms have just mushroomed beyond belief, and so it can be very intimidating to think about getting involved in the issue,” McGraw said.
Participating in a discussion about, say, how the local HIE will link with the NHIN and require HIPAA-compliant, CCHIT-certified systems can be challenging even for those who are well-versed in health IT.
Remedies and fixes
“You really need consumer organizations and organizations that represent patients at the table, and if they feel they can’t really meaningfully participate because the subject is too complicated, then that’s going to be a problem,” McGraw said.
Her organization and others developed a set of consumer principles written in plain English that they have made widely available (see “Consumer principles for health IT,” Page 18).
Rein said the federal government should be providing financial support for consumer groups to participate in the national health IT development process and educate consumers about health IT.
Most consumer organizations are stretched thin and lack expertise in health IT, she said. They find it difficult to devote time to participating in efforts such as HITSP because “the bandwidth just isn’t there,” she added.
Before she resigned from the HITSP board, “I used to get literally 50 e-mails a day,” Rein said. Also, the effort to harmonize various standards was moving quickly, and “I knew I was missing things. It just got to be way more than I could keep pace with.”
Polls and focus groups can also be effective ways of gauging consumer concerns when such people are not at the planning table. Maine’s HealthInfoNet spent $45,000 on focus-group research to learn what Maine residents knew about health IT and what they thought of it. “It was worth the money,” Culver said, because it helped shape an HIE that will get more voluntary participation from patients.
For their part, some health IT developers have expressed concerns that consumer advocates are only interested in patient privacy and therefore simply want to block the sharing of electronic health records. But many consumer representatives say they are enthusiastic about the possibilities such records represent.
“There’s so much potential” in the technology, Rein said, but without more consumer involvement, “we run the risk of not getting all the value from it. It’s really important that it get built in the right way.”
By Nancy Ferris
|
 |
|
Medical training Medical career Medical Ass Training srvice MTT Home training Medical coding Medical private Training Insurance Medical billing Medical field Medical nursing
Posted by http://mnurse.top-fr.info on June 15, 2008
finding a medical transcription job andres medical transcription medical transcription jobs from home medical transcription work placement program medical transcription transcription business proce medical transcription work online medical transcription online data entry medical transcription entry level jobs medical transcription job windsor ontario boise course medical transcription
Posted by http://mnurse.top-fr.info on June 15, 2008
available jobs in the medical transcription field employment in online medical transcription at home medical transcription jobs medical transcription jobs at home 1 year experience medical transcription jobs at home 20 oklahoma city medical transcription training course interrupted me constantly transcription medical what do they make medical transcription adpcm medical transcription medical transcription ce medical transcription aviva bangalore allied health medical transcription medical transcription rfp beginning medical transcription medical transcription gear
Posted by http://mnurse.top-fr.info on June 15, 2008
Cullinary School School arts culinary Culinary career Culinary college
Posted by Jimmy on June 19, 2008
Anti Spyware Free Spyware Spyware Removal Spyware Doctor Spyware
Posted by angel on June 21, 2008
putaria sexpartylog passiov sexkore 352free outdoorlog buceti kamranh kamsut
Posted by Dron on June 29, 2008
hunkslog girlslog zoophi soasgata brazzers groupl drunklog sunpor naugty ninfetu footfeti bigtitslog hapyse fudendo sanjesh porniz virginity 111host fudendo desibab pitanga toonslog 352host bucetar tuoimoi milfno interracialog litinasl purenud usalol prete milflog contos modelman revis largen vladmod safada safad
Posted by Goric on July 4, 2008
gay sex gay hardcore rape favorite free gay mature cock pics free gay boy vids gay xxx men fucking hardcore gay pain fucking hot gay men in the military fucking and sucking cock hairy bears gay gay massage amateur video polical cartoons on gay marriage free gay cum shot videos his first time gay sex young gay cock and balls gay sucks dick for cum free gay big cock movies
Posted by sddsg on July 23, 2008
hi all. I just found a great site for warcraft gold and wow leveling. Are you all aware what wow power leveling is? It is where someone plays your character. You can also buy gold wow from Live4Game as well. Good luck to you all. If you are in the mood for Final Fantasy XI gil, then please go to FFXI Gil, Buy FFXI Gil, FFXI Gil Sale, Cheapest FFXI Gil, Buy Cheap FFXI Gil, final Fantasy XI Gil, Cheap FFXI Gil.
Posted by zoe on August 2, 2008
antispyware spybot spyware software super antispyware hoax spyware removing
Posted by sddsg on August 6, 2008
mac-dvd-ripper
Posted by liliana on August 19, 2008
video converter mac ，avi to dvd creator for mac
Posted by liliana on August 19, 2008
The site www.govhealthit.com is good resource, good job, owner. look at this buy liquor online
Posted by buyliquorlot on August 20, 2008
This is where you best dollar savings accounts worldwide garb the redemptional your money. Most adroitly savings accounts in clarification that atrophy duties predict from settling to mixture and the weep for applies to paving dance plenty buyers only.
Posted by buyliquorlot on August 21, 2008
savings account interest rateslot educational savings account
Posted by savingsaccountpaydayloanslot on August 22, 2008
Nice site Thanks, webmaster.
Posted by buyliquorlot on August 24, 2008
Nice site Thanks, webmaster.
Posted by Ipod Nana Online on August 25, 2008
Cool blog Thanks, webmaster.
Posted by best savings accounts uk on August 26, 2008
drunk sex drunk moms drunk sluts drunk mature drunken mature drunk slut drunk bitch drunken moms mature drunk drunk mom drunk whore drunk chick drunk party drunk naked sex drunk drunken mature sex drunk mature sex drunk woman drunken sex drunken mom naked drunk drunk mature whores drunk mature porn drunken girl drunk matures drunken mature whores
Posted by Gallen on August 27, 2008
|
|
|
|
To post a comment you must be a registered user of GOVHEALTHIT.com and be logged in. Use one of the forms below to login or register for FREE to GOVHEALTHIT.com
|
|
|
|
