Who's Going to Direct Your Health-Care Choices?
By Sue Blevins

We're hearing a lot lately about the trend toward "consumer-directed health care" and the need for strengthening the "ownership society" in America .  These ideas couldn't be emphasized at a more important time.  Here's why:  

Payer Controls Choices
Currently, most Americans' health-care choices are controlled by employers and government.  Private businesses pay for approximately 27 percent of citizens' health-care expenditures while government pays for 35 percent (18 percent federal and 17 percent state and local).  It's well known that he who pays the piper calls the tune.  And when it comes to health care, employers and government are making important insurance decisions for the majority of Americans-deciding which treatments and providers are approved and which are not.  So the sooner consumers become empowered payers of health care, the sooner they will be calling the tunes.  

Ownership of Genetic and Other Health Information
David Vise, [co-]author of The Google Story, reports that Google.com is working with Craig Venter (of human genome-mapping fame) to enable people to search through their own genes.  This forthcoming computerization of genetic data raises important ethical questions: who owns your genetic information, and where will that information be stored?  Clearly, if employers and government are paying for genetic-related tests and treatments, they will be privy to information that some Americans may wish to keep private.  One way to enhance health privacy is for consumers to pay directly for these tests and treatments, as well as any other health care.    

Forthcoming Trend in "Personalized Medicine"
Another trend that we're hearing about is "personalized medicine," in which pharmaceutical companies use genetics to tailor treatments to the individual.  A senior executive with GlaxoSmithKline told The Independent (British newspaper) in 2003 that "the vast majority of [prescription] drugs-more than 90 percent-only work in 30 or 50 percent of the people."  At the same time, most-if not all-prescription-drug labels list a variety of side-effects, ranging from minor ones to serious consequences requiring medical intervention and hospitalization.  Thus the trend toward finding more effective treatments with reduced side-effects.  

Who Decides?
With these trends in health care, each of us should be asking:  Who will decide what type of health insurance and treatments I can purchase?   

If we continue with employer- and government-directed health care, we can be sure our choices will remain limited.  But with a move toward consumer-directed health care, individuals will be able to exercise their freedom of conscience in health care-an area in which many people don't want the collective masses-including bureaucrats-making personal health-care decisions for them. 

Sources:

• "Gene Search," The Business 2.0 Blog, accessed online December 5, 2005: (http://business2.blogs.com/business2blog/ 2005/11/gene_search.html).
• "Medicine Gets Personalised," Royal Society of Chemistry, July 2005: (http://www.rsc.org/chemistryworld/Issues/2005/July/Medicine_personalised.asp).
• "Glaxo Chief: Our Drugs Do Not Work on Most Patients," The Independent, December 8, 2003: (http://news.independent.co.uk/world/science_technology/article81625.ece) [paid subscription].
• Center for Medicare & Medicaid Services, "Table 1: Expenditures for Health Services and Supplies, by Type of Payer: United States, Selected Calendar Years 1987-2000": (http://www.cms.hhs.gov/statistics/burden-of-health-care-costs/table01.asp) [link was active on December 9, 2005].

Survey Shows Most Americans Are Concerned about Health Privacy
Respondents Feel More Secure With Paper Records than Electronic Medical Records

A recent national survey conducted by Forrester Research for the California HealthCare Foundation found that 67 percent of respondents are concerned about the confidentiality of their medical records, although the same percentage is "aware of federal laws that protect the privacy and confidentiality" of those records.  Thus even though a majority of Americans are aware of the federal medical-privacy rule, most don't believe it accomplishes what it promises.

This should not surprise those who understand that true health privacy means that individuals decide who can see their health information.  And since the medical-privacy rule stripped citizens of that decision-making power and gave it to the federal government and health-care industry, it's not surprising that citizens remain uneasy about their privacy.

Here are other findings of interest to privacy advocates:

• 63 percent of those who have not been diagnosed with a disease are concerned about their privacy. 
• Privacy is a bigger issue for minorities, with 73 percent expressing concern.
• Nearly one out of four respondents (24 percent) is aware of a specific incident in which privacy was compromised.  The percentage was higher among those with a college degree (29 percent) than among those without a degree (21 percent). 
• Concerns about employer use of medical-claims information has increased significantly since 1999.  In that year, when asked, "How concerned are you that claims information you provide an insurer might be seen by an employer and used to limit job opportunities?" 36 percent responded they were concerned (the survey report aggregates "very concerned" and "somewhat concerned").  In 2005, the percent of those concerned (very and somewhat) increased to 52 percent.
• Only 37 percent are willing to share health information with employers; 20 percent are willing to share it with government agencies.
• 98 percent of respondents are willing to share their health information with the doctors they use most often; but only 30 percent say they would share their records with doctors not involved with their care.

What's more, nearly one out of eight (13 percent) report having engaged in one or more of the following privacy-protection behaviors:

• Asked a doctor not to record a health problem, or record a less-serious/embarrassing diagnosis.
• Gone to another doctor to avoid telling their regular MD about a health condition.
• Personally paid for a test, procedure, or counseling rather than submit a claim, out of concern someone else would access the information.
• Decided not to be tested, out of concern that others might find out the results.

Finally, when asked whether they think medical records are more secure in paper or electronic form, respondents reported feeling better about paper: 66 percent believe paper records are secure, while 58 percent believe electronic records are secure.  Moreover, while 93 percent believe that computer-based systems give doctors and nurses quicker and easier access to patient information, 72 percent believe that such systems increase unauthorized access.

Source:  The survey and an executive summary can be downloaded from the California Healthcare Foundation's website: (www.chcf.org/privacy).

"Wired for Health Care Quality Act" Deeply Flawed
Patients Cannot Control Data Use

Legislation that allows for the electronic transfer of medical records is "deeply flawed" because patients do not have ultimate control over who can see and use their medical records, said Dr. Deborah Peel, MD, president of the Patient Privacy Rights Foundation.

The U.S. Senate [on November 18] passed the "Wired for Health Care Quality Act," [S. 1418] which promotes the adoption of a nationwide interoperable system for the electronic transfer of medical records via a network of healthcare databases.

Peel said, "This bill is deeply flawed because it will allow employers, hospitals, insurance companies, accountants, pharmacies, pharmacy benefits managers, financial service companies, data warehouses, medical transcribers, and other health-related businesses to have electronic access to medical records without the patient's permission and even over their objections."

"A key component of patient privacy is the ability to control who sees and uses your most private, sensitive healthcare information," Peel said.

"If Americans read the fine print in the 'Privacy Notices' they sign at their doctor's offices, they will learn they have no control over who sees their medical records," Peel said.  "Most uses of their medical records have absolutely nothing to do with their health-care treatment, preventing illness, or insurance payment."

Without the "right of consent" (eliminated by amendments to HIPAA in 2003), patients do not have the right to grant permission for their records to be shared.  Now, with the implementation of a nationwide interoperable health-care network, these records will be shared with hundreds of thousands of corporations and millions of their employees.

• Patients cannot "opt out" of this system
• Patients cannot segment sensitive records
• Patients cannot keep their [self-insured] employers from seeing their records
• Patients cannot control who sees and uses their data
• Audit trails of these innumerable disclosures are not required [for most purposes]

In addition to Patient Privacy Rights' efforts, thirty mental health practitioner and patient groups signed letters urging lawmakers to include patients' rights to control access to personal health information in any health information technology bill. These groups include the American Academy of Child and Adolescent Psychiatry, American Association of Practicing Psychiatrists, the American Nurses Association, American Occupational Therapy Association, and the National Association of Social Workers. 

S. 1418 passed without including these fundamental patient's rights to privacy, and the Senate referred this bill to the House Energy and Commerce Committee for consideration.

"We're extremely disappointed," Peel said.  "We believe that 21st century technology could actually be used to protect patient privacy if patient's rights are built into these laws. Opponents of the bill were told that amendments addressed data 'security', but the bill did not address 'privacy'."

Action in Congress now moves to the HIT bill in the House, the "Health Information Technology Promotion Act" (H.R. 4157), introduced by U.S. Representative Nancy Johnson.  H.R. 4157 sets up a process designed to preempt stronger state privacy laws and make the HIPAA Privacy Rule the national standard.

Source:  Patient Privacy Rights press release, November 18, 2005.

Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2005 Institute for Health Freedom.