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Recognize and Protect Americans’ Right to
Health Information Privacy in Health IT
By Prudence Gourguechon; MD
By Elizabeth Clark; PhD, ACSW, MPH
Dear President-elect Obama:
We look forward to your inauguration with the hope that you will restore the public’s trust in the nation’s institutions which has been so badly shaken by the failed policies of the Bush Administration over the past eight years. Nowhere is trust more important than in the delivery of quality health care and particularly for effective mental health care.
“Accordingly, we ask that you assure Americans that health information technology legislation under the Obama Administration will preserve and protect the patient’s right to health information privacy rather than erode or eliminate that right.”
We are encouraged that your nominee for DHHS Secretary, Senator Tom Daschle, has made prior statements reflecting support for the right to health information privacy in health IT legislation:
The issue of privacy touches virtually every American, often in extremely personal ways. Whether it is bank records or medical files or Internet activities, Americans have a right to expect that personal matters will be kept private. Today, in too many ways, however, our right to privacy is at risk. Our laws have not kept up with sweeping technological changes. As a result, some of our most sensitive, private matters end-up on databases that are then sold to the highest bidder. That is wrong, it’s dangerous, and it has to stop.[1]
We are further encouraged by the recent statements of Senate Majority Leader Reid and House Majority Leader Hoyer that Congress should get the items in the stimulus package right “the first time.”[2] In 2004, President Bush announced a goal of ensuring that most Americans health records would be accessible in an electronic health information system by 2014.[3] The Department of Health and Human Services has pushed to accomplish that goal while demonstrating little commitment to preserving the individual’s right to HI privacy.[4] HHS under the Bush Administration ignored the earlier HHS findings that strong privacy protections are essential if the full benefit of health IT is to be realized.[5] The Bush Administration “replaced” the individual’s right of consent for the disclosure of identifiable health information adopted in the HIPAA Privacy Rule by the Clinton Administration, with “regulatory permission” for millions of covered entities and their business associates to disclose identifiable health information without the individual’s consent and over his or her objection.[6] This policy reversal stripped Americans of their traditional health information privacy protection and essentially turned the HIPAA “Privacy” Rule into a disclosure rule.
In the past five years since the amended HIPAA Privacy Rule was put into effect, there have been more than 40,000 complaints of health information privacy violations of the HIPAA Privacy Rule, but HHS has not imposed a single civil penalty.[7] Since January 2005, the privacy of more than 42 million electronic health records has been breached or compromised.[8] Currently 250,000 Americans each year are victimized by health identity theft.[9] A recent HIT industry survey found that all of the electronic health information systems currently in use are “severely at risk of being hacked” and the health information stolen or altered.[10] According to Department of Justice figures, 67% of health care businesses that use health IT have been the victims of cybercrime resulting in the health IT systems of more than 80% of those businesses being down five hours or more at a cost of tens of thousands to hundreds of thousands of dollars. Health care businesses reported the greatest duration of downtime of any category of business.[11] Electronic data breaches increased by nearly 50% last year.[12]
It is, therefore, not surprising that nearly 70% of Americans have heard or read about medical records being lost or stolen, and most of those believe that computerized health records are the most vulnerable. Approximately, 21 million Americans believe their medical records already have been lost or stolen.[13]
Even the Bush Administration has conceded belatedly that privacy protections are essential for public acceptance of a health IT system and that those protections must include the right of the individual to make an “informed decision” about the collection, use and disclosure of individually identifiable health information.[14] HHS Secretary Leavitt recently stated, “Consumers shouldn’t be in a position to have to accept privacy risks they don’t want.”[15]
Other groups that have been hesitant in the past to support privacy protections have recently begun to acknowledge that health IT legislation must require privacy protections in the “forefront of all technological standards” and must assure the public that identifiable health information will be disclosed only with the patient’s consent.[16] Even the Department of Homeland Security has recently adopted Fair Information Privacy Practices consistent with the Privacy Act of 1974 that require individual consent for the collection, use, dissemination, and maintenance of personal information.[17]
There should be no question that Americans have a right to privacy for highly personal health information. The right to informational privacy was recognized by Congress as a “fundamental right” of all Americans protected by the Constitution in the Privacy Act of 1974 and by HHS under the Clinton Administration when it issued the original HIPAA Privacy Rule.[18] According to prevailing case law, the Constitutional right to privacy for highly personal health information is now so well established that no reasonable person could be unaware of it.[19] The right to health information privacy is also protected by the physician-patient privilege recognized in 43 states,[20] and the psychotherapist-patient privilege recognized in all 50 states, the District of Columbia and in Federal common law.[21] The right to privacy of personal information including health information is also protected by the tort law or statutory law of all 50 states,[22] and 10 states include a specific right to privacy in their state constitutions.[23]
HHS, under both the Bush and Clinton Administrations, has recognized that health information privacy is essential for quality health care because patients will not disclose information necessary for accurate diagnosis and treatment unless they are confident that their right to health information privacy will be protected.[24] The patient’s right of consent for the disclosure of identifiable health information is also a core element of the standards for the ethical practice of health care for virtually all health professionals.[25]
Accordingly, we ask that you take a truly patient-centered approach to health IT and that you ground a national electronic health information system in the core concept of professional ethics which provides that, where possible, informed consent will be obtained for the disclosure of an individual’s identifiable health information.[26]
We recommend that you adopt the patient-centered, ethics-based approach to health IT set forth in the TRUST Act (H.R. 5442) which was introduced by Congressman Ed Markey in the last Congress and was co-sponsored by former Congressman Rahm Emanuel, current Energy and Commerce Chairman Henry Waxman and 13 other House members.
The country needs a new direction in health information technology legislation that preserves and protects fundamental rights and acknowledges that, while health IT may provide benefits in the future, it also poses an immediate threat to the right to privacy that Americans cherish and expect.
With the greatest respect and hope for the future.
Prudence Gourguechon; MD
President
American Psychoanalytic Association
Elizabeth Clark; PhD, ACSW, MPH
Executive Director
National Association of Social Workers
For more information, contact:
James C. Pyles, Esq.
Powers Pyles Sutter & Verville, PC
1501 M Street, N.W., 7th Floor
Washington, D.C. 20005
202/466-6550
For the American Psychoanalytic Association
James K. Finley
750 First Street, N.E.
Suite 700
Washington, D.C. 20002
292.366-8315
For the National Association of Social
Workers
REFERENCES:
[1] Statement by Senator Tom Daschle on the establishment of the Congressional Privacy Caucus, Cong. Record-Senate, S11777 (Dec. 14, 2000).
[2] Top Democrats Give Longer Timetable for Stimulus Bill, The Washington Post, A2 (Jan. 5, 2009).
[3] “President Bush’s Technology Agenda,” (Jan. 20, 2004). http://www.whitehouse.gov/infocus/technology/economic_policy200404/chap3.html
[4] Health Information Technology, Efforts Continue but Comprehensive Privacy Approach Needed for National Strategy, GAO-07-988T, p. 3 (June 19, 2007); Health Information Technology, Early Efforts Initiated but Comprehensive Privacy Approach Needed for National Strategy, GAO-07-238, p. 4 (Jan. 10, 2007).
[5] 65 F.R. 82,466 (Dec. 28, 2000).
[6] Compare, “Our regulation will ensure that those consents cover the routine uses and disclosures of health information, and provide an opportunity for individuals to obtain further information and have further discussions, should they so desire.” 65 F.R. 82,474 (Dec. 28, 2000) with “The consent provisions…are replaced with a new provision…that provides regulatory permission for covered entities to use or disclose protected health information for treatment, payment and health care operations.” 67 F.R. 53,211 (Aug. 14, 2002).
[7] Health Information Privacy/Security Alert (Jan. 5, 2008).
[8] Privacy Rights Clearinghouse, http://www.privacyrights.org/ar/ChronDataBreaches.htm.
[9] “Panel: Electronic Health Records May Save Money, But Can They Keep Information Safe?” CQ Healthbeat News (June 19, 2008).
[10] “Electronic Records at Risk of Being Hacked, Report Warns,” Search CIO.com (Sept. 19, 2007).
[11] Cybercrime Against Businesses, 2005, U.S. Dept. of Justice, Bureau of Justice Statistics, Special Report, pp. 6, 13, 16, 18-19 (Dec. 2008).
[12] Data Breaches Up Almost 50%, The Washington Post, D2 (Jan. 6, 2009).
[13] “Millions Believe Personal Medical Information has Been Lost or Stolen,” Harris Poll (July 15, 2008).
[14] “Individual Choice Principle,” HHS Privacy Principles (Dec. 15, 2008). http://www.hhs.gov/healthit/documents/NationwidePS_Framework.pdf
[15] HHS News Release (Dec. 15, 2008).
[16] e-Health Initiative presentation to Obama-Biden Transition Team, p. 16. http://www.ehealthinitiative.org/assets/Documents/eHealthInitiativeConsensusPolicyExecutiveSummaryDec2008.pdf
[17] Privacy Policy Memorandum, Department of Homeland Security, p.3 (Dec. 29, 2008).
http://www.dhs.gov/xlibrary/assets/privacy/privacy_policyguide_2008-01.pdf
[18] Pub. L. 93-579, sec. 2(a)(4): “The Congress finds that the right to privacy is a personal and fundamental right protected by the Constitution of the United States.” “Privacy is a fundamental right.” 65 F.R. 82,464 (Dec. 28, 2000).
[19] Gruenke v. Seip, 225 F.3d 290, 302-03 (3rd Cir. 2000). See also, Sterling v. Borough of Minersville, 232 F.3d 190, 198 (3rd Cir. 2000).
[20] See, e.g., Northwest Mem. Hosp. v. Ashcroft, 362 F.3d 923 (7th Cir. 2004).
[21] Jaffee v. Redmond, 116 S.Ct. 1923 (1996).
[22] HHS Finding, 65 F.R. 82,464 (Dec. 28, 2000).
[23] Those states are Alaska, Arizona, California, Florida, Hawaii, Illinois, Louisiana, Montana, South Carolina, and Washington.
[24] National Privacy and Security Framework, p.1, Dept. of HHS (Dec. 15, 2008); 65 F.R. 82,468 (Dec. 28, 2000).
[25] Finding of National Committee on Vital and Health Statistics, report to Sec. Leavitt, p. 3 (June 22, 2006).
[26] American Medical Association policy, H-315.978 Privacy and Confidentiality, reaffirmed 2001.
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Filed under: Breaking News, Ethics, Health Economics, Health Law & Policy, Information Technology, Op-Editorials, Quality Initiatives, Research & Development | Tagged: barack obama, DHS, Ed Markey, Elizabeth Clark, George Bush, Harry Reid, Henry Waxman, HIPAA, Privacy Act, Prudence Gourguechon, Rahm Emanuel, Tom Daschle, TRUST Act (H.R. 5442) |
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Darrell and Executive-Post Readers,
Thanks for bringing me up to date. It appears that President-elect Obama is well-intended but people have been filling his head with nonsense about HIT saving money and saving lives. The cynicism of those who make the cost saving argument is revealed in the fact that they are trying to get funding in the stimulus package because nothing in that package is designed to save money but rather to put Americans to work. The Congressional Budget Office released its report in December finding that a nationwide HIT system will cost $500 billion over ten years and is unlikely to produce any net savings. “Evidence of savings in the health care sector as a whole is limited.” CBO Key Issues in Analyzing Major Health Insurance Proposals, p. 149 (Dec. 2008).
I am attaching an Open Letter to President-elect Obama which you may use as you see fit. You will note that every statement in the letter sets forth a fact that is corroborated in footnotes.
Keep up the good work.
James C. Pyles, Principal
POWERS PYLES SUTTER & VERVILLE PC
1501 M Street NW, Seventh Floor | Washington, DC 20005-1700
tel 202.466.6550 | fax 202.785.1756
jim.pyles@ppsv.com | http://www.ppsv.com
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Jim,
I hope the New Year is going well for you and your family.
This is a private email and/or blog post, but you are welcome to share it with friends you trust … or not.
It centers on the private conversation I am having with Valerie Powell PhD concerning the future of dentistry. Valerie already confided to me that she is also sharing our conversation with close associates.
I’m putting some things together and thought you might be interested in following the thread.
I don’t think I am stretching the truth when I claim that I have already set the pace for the future official negotiations over dentistry and electronic health records in front of the US Senate (mid-July?).
I’ll also tell you that the official plans of the ADA House of Delegates’ – whatever they may be – matter squat to me. If the House tune is not my tune, the House is out of tune. It is my opinion that regardless of what I personally do, it would be a really bad idea for the ADA to risk getting caught lobbying for IT bailout money. That would reliably erode any remaining credibility that the ADA has with Congress – following Ahlstrom’s controversial HIPAA testimony.
https://healthcarefinancials.wordpress.com/2009/01/08/hipaa-and-dentistry
That is just my opinion.
My counterpart at this point in my adventure is Dr. Powell, who knows everything about chronic diseases and healthcare IT, but she knows nothing about the business of dentistry – which I have discovered is typical for those who would manage our practices with swell and expensive ideas.
I look at the situation, and it occurs to me that I am the only dentist in the nation saying anything at all about electronic health records in public. You have to agree that this is not a favorable verdict for ADA representation. That is how bad the information vacuum has become in our profession. Valerie wants to fill it with her stuff based on academic fantasy, and I want to fill it with my stuff based on 26 years of dentistry. Forget about the ADA.
From all outward signs, the ADA organization is in a coma. I don’t mind filling the vacuum … for now!
-Darrell K. Pruitt; DDS
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Digital Health Records?
Implementing eHRs will be tough, and many hurdles stand in the way.
For example, only about 8% of the nation’s 5,000 hospitals and 17% of its 800,000 physicians currently use the kind of common computerized record-keeping systems that Obama envisions for the whole nation.
-Frank
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Video on Quality eHRs
President-elect Obama is right to emphasize quality in his vision for electronic health records. Electronic health records may help us solve the healthcare quality problem, but if they are implemented solely as a technology initiative and we fail to fix the larger quality problem we will have an even higher cost but still broken system.
Also, the privacy issue is indeed a key one. It is my understanding that the plan is not so much to build some uber-database with everyone’s medical records, but rather to make the records interoperable so that care providers can reach across the healthcare infrastructure to access the information they need. With multiple IT heavyweights creating their own personal health record products, and with different EMR systems in place, the distributed approach is also more practical.
I hope all these different solutions can play together.
See video discussions:
http://www.healthcaretownhall.com
-Jeremy
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An unanswered invitation to Obama
A little over a year ago, I invited Sen. Barack Obama to a discussion on the Texas Dental Association Free Forum. I was hopeful for a response of some kind from someone on his Internet-connected staff but I imagine that the entire team was too busy back then to consider dental care. That’s nothing new.
Let’s see if anyone is paying attention yet. I think there is a 50:50 chance that we might get a response in a day or so; that would be swell.
Don’t tell anyone, but HIPAA failed long ago and the nation’s politicians who are aware of the failure, in both government and dentistry, are trying to keep it a secret until at least after the next presidential election. I am afraid the bad news won’t wait. I think Senator Barack Obama will help me spill the news for the first time on TDAFF by responding to this essay. It is worth a try. From what his campaign website says, he is a fan of modern communication and TDAFF is revolutionary in healthcare – as well as consistent with Obama’s ideas for government. Keep reading. I’ll show you the event horizon, friend.
All presidential candidates, including Obama, still have no clue about the absurdity of HIPAA because politicians never consider dentistry. That is an unfortunate failure of our ADA leadership. It is nothing new. For a long time now, ADA leaders have been telling politicians what they think Washington wants to hear, rather than telling the truth. In addition, they willfully mislead membership as well, while trying to keep from telling them much at all. That is also nothing new.
While searching for a presidential candidate to invite to participate in open discussion about the future of dentistry in Texas, I came across Barack Obama’s campaign website. http://www.barackobama.com/issues/technology/#solve-problems
Under his stated commitment to invest in healthcare information technology, his campaign reveals that “A key feature of Barack Obama’s health care plan is the use of technology to lower the cost of health care.” He certainly was not considering dentistry when he wrote that statement. He also was not considering dentistry when he wrote that paper records are inferior to electronic records when coordinating care, measuring quality and reducing errors.
Senator Obama claims that he will develop healthcare IT in coordination with providers and frontline workers. Once again, I think we can be certain that he was not thinking about dentists. Healthcare IT is going nowhere in dentistry.
He does, however, make a valid point that paper claims cost twice as much to process than electronic. That makes digitalization of dental claims a wonderful opportunity for the insurance industry to increase their profits as well as executive bonuses. But it falls far short of a dentistry concern, nor is reducing insurance overhead at all consistent with the mission of the ADA. If insurers want to save money using digitalized data, they deserve to. This is America. They will just have to convert paper dental claims themselves. For every dollar they require dentists to invest in their IT infrastructure, someone goes to bed with a toothache. Accessibility to dental care is not only consistent with the mission of the ADA, but it is always more important than CEO stock options.
The virtually complete rejection of eHRs in dentistry proves that dentists do not want the expense and liabilities that come with paperless practices, regardless of what naïve and ambitious leaders in the ADA say. Besides, even after being heavily pushed by entrepreneurial and governmental stakeholders, fewer than 5% of physicians have adopted eHRs.
Because physicians must maintain four to five times the number of patients’ records as dentists, and because medical histories can be as thick as telephone books, as well as the constant need for lab results and consultations with others that is almost non-existent in dentistry, physicians’ patients might actually benefit from eHRs some day. However, the Department of Health and Human Services has to finally resort to paying 1,200 physicians across the nation just to get them to try eHRs. How much will taxpayers have to pay dentists to try them, considering they offer no tangible benefits for dental patients, while the expenses and liabilities of being HIPAA compliant continue to increase because there is nothing holding down the cost? Taxpayers cannot afford any more mandate fantasy.
Now that the truth is out, and HIPAA is inescapably dead in dentistry, where do we go from here? Before the ADA can go forward with any meaningful political representation following this PR disaster, the failure of leadership in the effort must be accepted and HIPAA has to be officially sidelined if not abandoned completely. Organized dentistry must separate itself from the rule because actions allowed and even encouraged by the act directly harm dental patients. The HIPAA rule is unethical, not only because it methodically takes control of treatment decisions from dentists and patients, but because it is a complete failure at protecting patient privacy as well. HIPAA clearly disregards the Hippocratic Oath in many painful ways.
So how could the failure of interoperable eHRs in dentistry affect the election if someone like Barack Obama were paying attention? Many politicians as well as ADA leaders who also know little about dentistry promise higher quality (fillings) at lower prices. Any dentist who has ever done a filling has to wonder how eHRs can possibly cause that to happen. Will Barack Obama really listen to reason, or will he ignore dentists just like the Bush administration does? Let us see for ourselves. I will send the invitation to his website http://my.barackobama.com/page/s/mypolicy
I hope it will handle 1,700 words.
I chose candidate Barack Obama to highlight, not because I particularly support him, but because of my interest in another promise he posted under the topic: “Create a Transparent and Connected Democracy – Open up Government to Citizens.”
His campaign literature claims that an Obama presidency will use cutting-edge technology, creating a new level of transparency, accountability and participation. Furthermore, his campaign promises that it has a vision of how technology can help connect government to its citizens and better engage them in democracy. It already sounds a lot like TDAFF, doesn’t it? Hmmm! Who is copying whom? Maybe Obama and I both sense society’s desire of better, more inclusive democratic governance.
In his list of ways to integrate citizens into the actual business of government, he includes making government data available online. Perhaps if Obama were president, I could find out how many dentists in Texas have NPI numbers. Neither the Department of Health and Human Services nor the ADA Department of Dental Informatics will let go of that information. I assume they keep it a national secret for my own good.
Without even one mention of “2.0,” there are plenty of web 2.0 characteristics in the fresh ideas Obama offers in his campaign. Not only does he promote blogs, wikis and social networking, but he wants to open up government decision-making and involve the public in the work of agencies by tapping into the vast expertise of citizenry to help make more informed decisions. This represents “architecture of participation” – the classic characteristic of web 2.0. Today, this is also called using the Internet as a “platform.” Today’s ADA is reluctant to allow such control from membership, even though it is an organization composed of trusted and highly educated professionals, dedicated to the welfare of others, who each one pay dues to the non-profit organization. Go figure.
Get this. Whereas TDA officials are staying away from this free forum in droves, Obama would require his appointees to employ all the technological tools available including blogs, wikis and social networking. He pledges to modernize information sharing in order to improve governance and to allow citizens to be heard. ADA officials still use letters to the editor -“Talk to the hand, doctor.” No kidding. That is not all. If a dentist wishes to discuss a serious and possibly embarrassing policy issue with ADA leaders, some regress to the security that the tactile sense of paper provides. I think that in tricky times they prefer the accountability that the US Post Office delivers no faster than a postman can walk. But by far, the usual response over the Internet is the official silence we are witnessing on this free forum right now.
I think it is now appropriate that I notify everyone that I hold no official position within the ADA or any other professional organization. I represent only myself and I hold myself accountable for everything I say. I am merely a garden-variety member with no rank and I have a life-long immunity to embarrassment through trial and error desensitization… lots of errors in countless trials.
Here is the reason that I think Obama just might listen, even though he has misconceptions about eHRs. He says he wants to restore the basic principle that government decisions should be based on the best-available, scientifically-valid evidence and not on the ideological predispositions of agency officials. Wow. That could cost some people their jobs in the ADA.
Now if I can only get Barack Obama to understand that HIPAA does not help dental patients, he will be the first ever enlightened politician in ADA history, inside or out.
-Darrell K. Pruitt; DDS
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Is Obama serious about health reform?
I don’t think so. What do you think?
Clive
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Interesting post and comments; but true healthcare reform, as proposed under the Obama administration, will bring some ‘real changes’ for small physician practices, according to Nydia Velázquez, chairman of the House Committee on Small Business.
More here: http://www.healthcarefinancenews.com/news/small-physician-practices-can-expect-real-changes-healthcare-under-obama-budget
Holly
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Op-ed: Doctors are forced into running a business
July 3, 2009
Holly; a version of this op-ed was published on June 18th, 2009 in The New York Times’ Room for Debate blog.
Link: http://roomfordebate.blogs.nytimes.com/2009/06/18/better-medical-care-for-less/#kevin
Linda
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Linda,
But, who will pay for healthcare reform?
Here is an interesting article.
http://www.washingtonpost.com/wp-dyn/content/article/2009/06/16/AR2009061603440.html
Jody
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Surgeons Oppose Senate Healthcare Bill
The Hill reports that the American College of Surgeons and 19 other groups representing surgeons delivered a letter on 11/04/09 to Senate Majority Leader Harry Reid (D-NV) stating their opposition to the Senate’s healthcare reform legislation. The letter states that “We are writing today to reiterate our serious concerns with several provisions that were included in the health care reform bill that was considered by the Senate Finance Committee and to let you know that if these concerns are not adequately addressed when a health care reform package is brought to the Senate floor, we will have no other choice but to oppose the bill.”
The article also stated, “The surgeons object to funds for surgeons being redirected to primary care physicians; a proposal to create an independent commission on Medicare payment policy that would not require congressional action to take effect; requirements that doctors participate in a quality measurement program. Furthermore, the groups protest the Senate’s decisions to not enact a permanent reform to the Medicare payment system and to not enact limits on lawsuits for medical malpractice.”
Source: The Hill via Medical Industry News [11/19/09]
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Incredible!
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It seems to me that sports fans will soon witness a hard, punishing collision between a committee-approved bird that can’t fly unassisted and a fast, free-market turbine. It will be messy – mind your eyes.
It’s already too late for flailing mid-level stakeholders who aren’t important enough to dodge accountability. HIPAA. informatics and eHR fans will lose in an especially ugly way.
Politicians will never be forgiven if the Senate approves the pending Healthcare Reform plan in a few hours. Within a year, voters will teach bureaucrats that they cannot keep taking control from providers and patients without getting spanked. The closer Americans look the madder they’ll get. By Thanksgiving, they could have 20 pound, 2500 page turkey to chew on.
As more doctors learn what ambitious, paper-thin stakeholders have been quietly planning, they will not be amused. Those whose careers depend on a successful health plan happen to desperately need doctors’ help. Bureaucrats have made the rookie mistake of squatting on ground they cannot defend. Politicians will be crushed.
Maybe a year from now when the team is rotated, the next Senate will remember that they cannot take advantage of any group of Americans by excluding them from the negotiations. Tyranny will not be tolerated and payback is hell.
God bless America.
D. Kellus Pruittl; DDS
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