CONFERENCE 2006 30 Years

1
CONFERENCE 200630 Years

• Canadian Health Libraries Association
• May 12 16, 2006
• Vancouver, BC

2
The Social Impact of Computers in Medicine

• Richard S. Rosenberg, Professor Emeritus
• Department of Computer Science
• University of British Columbia
• Vancouver, BC
• rosen_at_cs.ubc.ca

3
Medicine and Computers

• MEDICAL INFORMATION SYSTEMS
• A Very Large Medical Information System
• Recent Developments in the Military System
• Computer-Based Patient Record
• The (Almost) Digital Hospital
• Protecting the Medical Record
• Key Information Technologies for Health Care
• Medical Databases

4
Contd.

• MEDICAL APPLICATIONS
• Body Imaging
• CAT Scanners
• Nuclear Magnetic Resonance (NMR) or Magnetic
  Resonance Imaging (MRI)
• Positron-Emission Tomography (PET) Scanners
• A Future Scenario

5
Contd.

• Medical Applications Contd
• Storage of Images
• Electronic Monitoring
• Robot Surgery
• Computers in Medical Education
• Medical Expert Systems

6
Contd.

• COMPUTERS AND THE DISABLED
• The Visually Impaired
• Digital Hearing Aids
• Other Assistive Technologies
• The Disabled at Work
• Access to Libraries
• A Very Personal Computer

7
Finally.

• MEDICINE AND THE INTERNET
• Doctors and E-mail
• Doctors Use of the Internet
• Health Information on the Internet
• Telemedicine
• Richard S. Rosenberg. The Social Impact of
  Computers. San Diego, CA Elsevier Academic
  Press, 3rd Edition, 2004, Ch. 5, Medicine and
  Computers, pp. 173-212.

8
OUTLINE

• MEDICAL DATABASES AND INFORMATION SYSTEMS
• TELEMEDICINE
• Information Access
• Monitoring
• Tests and Treatments
• HEALTH PRIVACY ISSUES ON THE INTERNET
• CONCLUSIONS

9
MEDICAL DATABASES

10
Steps Toward Health IT

11
HHS Is Taking Steps toDevelop a National
Strategy 95

• Lessons learned from DOD and VA that could
  provide valuable insight to HHS as it works
  toward implementing a national health IT
  infrastructure.
• obtain full endorsement of top leadership,
• define and adopt common standards and
  terminology,
• recognize and address the needs of the varied
  stakeholder communities, and
• deploy in small increments and build on success.

12
Contd.

• Canada, Denmark, and New Zealand have begun
  initiatives to establish national health IT
  infrastructures with government support and
  identified lessons learned from their
  experiences, such as
• focus on creating standards first,
• establish a central organization to lead health
  IT efforts, and
• implement solutions incrementally.

13
All Electronic Medical Files Planned by 2009

• the province BC plans to implement by 2009
  an electronic system that will see all
  paper-based patient files, now growing dusty in
  doctors filing cabinets, put on computers and
  shared throughout the province.
• The Vancouver Sun, May 2, 2006, B6.

14
Bill to Promote Electronic Health Records US

• In an effort to dramatically expand the use of
  electronic health records, a key House chairman
  said yesterday that he will propose legislation
  to promote their use in the federal employee
  health insurance program.
• They just need the encouragement to take it to
  the next step, Porter said. This should help
  families all over the country . . . whether they
  are in the federal program or not.

15
Finally.

• The proposed system would provide for a personal
  health record, which would be protected by a
  personal identification number, or PIN. Federal
  employees and retirees who become ill or injured
  while traveling could make their health
  information, such as allergies or medications,
  available to doctors and hospital emergency
  rooms, Porter said.
• Stephen Barr, Bill to Promote Electronic Health
  Records, Washington Post, Thursday, March 2,
  2006 D04

16
Health Care The Stakes Are Immense in the US

17
Contd.

• Health ITthe technology used to collect, store,
  retrieve, and transfer clinical, administrative,
  and financial health information
  electronicallyis seen as a promising solution to
  improve patient safety and reduce inefficiencies.
  Hence, it has great potential to improve the
  quality of care, bolster preparedness of our
  public health infrastructure, and save money on
  administrative costs.

18
Finally.

• Federal agencies face many challenges in
  improving the public health infrastructure. These
  challenges include (1) integrating current
  initiatives into a national health IT strategy
  and federal architecture to reduce the risk of
  duplicative efforts, (2) developing and adopting
  consistent standards to encourage
  interoperability, (3) coordinating initiatives
  with states and local agencies to improve the
  public health infrastructure, and (4) overcoming
  federal IT management weaknesses to improve
  progress on IT initiatives.
• Health Information Technology HHS is Continuing
  Efforts to Define a National Strategy,
  GAO-06-346T, March 2006. http//www.gao.gov/new.it
  ems/do6436t.pdf

19
RAND STUDY

• The Diffusion and Value of Healthcare
  Information Technology, 2005. Key Findings
• EHR Electronic Health Record is diffusing at a
  rate consistent with other similar IT
  technologies in other industries. EHR diffusion
  is explicable using modern diffusion theory
  applicable to complex, highly networked IT
  products.

20
Contd.

• Complex electronic medical records are, after a
  20-year waiting period, rapidly diffusing in many
  segments of our healthcare system, with about 30
  percent of acute-care hospital providers
  reporting by the end of 2003 that they had
  ordered EHR products, and will reach 80 percent
  saturation in hospitals by about 2016or earlier
  if assisted by government or other organizations.
  Diffusion among physicians offices is 1016
  percent, depending on the measure.

21
Contd.

• More important than hastening adoption, which
  appears to have taken off since 1999 without
  intervention, is ensuring that appropriate
  incentives are in place so that complex EHRs will
  be used effectively.
• The benefits of the current increase in HIT
  spending are arguably a cumulative 1 percent per
  year, but the range varies widely depending on
  what else the government and healthcare players
  do. Other industries have shown quantifiable IT
  labor productivity benefits ranging from 0
  percent to perhaps 4 percent per year.

22
Finally.

• Speeding up adoption may be beneficial, although
  it depends on the presence of other factors such
  as competition and regulation. There is very
  strong evidence that HIT will complement other
  pro-productivity features such as competition and
  deregulation. HIT is an enabler of change in how
  work gets accomplished. This is especially true
  of complex electronic medical records.
• www.rand.org/pubs/monographs/2005/RAND_MG272.pdf

23
TELEMEDICINE

• Telemedicine can be broadly defined as the use
  of information technology to deliver medical
  services and information from one location to
  another.

24
Networking Health Prescriptions for the Internet

• Enable consumers to access their health records,
  enter data or information on symptoms, and
  receive computer-generated suggestions for
  improving health and reducing risk
• Allow emergency room physicians to identify an
  unconscious patient and download the patient's
  medical record from a hospital across town
• Deliver care instructions to a traveling
  businessperson who begins to feel chest pains
  while in a hotel room

25
Contd.

• Enable homebound patients to consult with care
  providers over real-time video connections from
  home, using medical devices capable of
  transmitting information over the Internet
• Support teams of specialists from across the
  country who wish to plan particularly challenging
  surgical procedures by manipulating shared
  three-dimensional images and simulating different
  operative approaches
• Allow a health plan to provide instantaneous
  approval for a referral to a specialist and to
  schedule an appointment electronically

26
Contd.

• Enable public health officials to detect
  potential contamination of the public water
  supply by analyzing data on nonprescription sales
  of antidiarrheal remedies in local pharmacies
• Help medical students and practitioners access,
  from the examining room, clinical information
  regarding symptoms they have never before
  encountered and
• Permit biomedical researchers at a local
  university to create three-dimensional images of
  a biological structure using an electron
  microscope a thousand miles away.

27
Finally.

• National Research Council. Networking Health
  Prescriptions for the Internet. (Washington, DC
  National Academy Press, 2000). Available at
  http//books.nap.edu/html/networking_health/

28
Health Information Online
29
Health Information Online

• Pew Internet and American Life Project, 2005
  (www.pewinternet.org/pdfs/PIP_Healthtopics_May05.p
  df)
• Eight out of ten (79) American internet users
  have searched for information on at least one
  major health topic online, statistically the same
  portion (80) as in 2002. That translates to
  about 95 million American adults (18 years) who
  use the internet to find health information (a
  small increase from 2002 because the internet
  population has grown a bit). As in 2002, certain
  groups of internet users are the most likely to
  have sought health information online women,
  internet users younger than 65, college
  graduates, those with more online experience, and
  those with broadband access.

30
E-Health and the Elderly

31
How Seniors Use the Internet for Health
Information

• Key Findings (Available at www.kff.org)
• Less than a third of all seniors have ever gone
  online in fact, fewer than half have ever used a
  computer.
• Over the next decade, as baby boomers and other
  adults get older, the proportion of seniors using
  the Internet is likely to increase dramatically.

32
Contd.

• There is a substantial digital divide among
  seniors based on income, education, age, and
  gender.
• The Internet is already a source of health
  information for one in five senior citizens.
  However, seniors still rely much more on
  traditional media such as TV and newspapers for
  health information.
• Many seniors dont trust the Internet as a
  source of health information but for 50-64 olds,
  the Internet is even more trusted than other more
  traditional media.

33
Finally.

• Older Americans say that doctors are not
  encouraging them to use the Internet for health
  information or to communicate with providers. But
  many say that drug companies and other health
  marketers are using the Internet to market to
  them.
• Looking for information on prescription drugs is
  one of the top reasons seniors use the Net for
  health information, but only 5 say they have
  bought prescriptions online.
• More than two-thirds (69) of online seniors (or
  21 of all seniors) have looked up health
  information online, pursuing a wide range of
  issues.

34
Some Examples of Online Medicine

• On-line therapy the faceless cure?
• Kali Munro, now president-elect for the
  International Society for Mental Health Online,
  considers e-therapy a good alternative to
  face-to-face help. And she isn't alone More and
  more people are logging on to find help for
  problems they can't or won't take elsewhere. They
  meet one on one with a therapist in a chat room
  or exchange e-mail with a counsellor. (Globe and
  Mail, April 22, 2005)

35
Contd.

• The Doctor in Your Pocket
• Through a new service called MyFoodPhone, Mr Katz
  uses the camera built into his phone to take a
  picture of every meal. This is far easier than
  writing everything down in a food log, which the
  44-year-old New Yorker did the last time he was
  fighting high cholesterol. At the end of each
  week, his nutritionist e-mails him a dietary
  critique. I was never one for the whole food-log
  thing, says Mr Katz, who owns a floor-covering
  business. Now I'm doing better at keeping track
  of what I eat. I always have my phone with
  meit's like having a conscience hanging on your
  waist. (The Economist, September 15, 2005)

36
Contd.

• Home Alone
• At IBM's research lab in Zurich, researchers are
  working on a mobile-health toolkit to link
  medical devices with wireless networks. Called
  mHealth, the kit could, for example, work with
  Bang Olufsen's Helping Hand so that a forgotten
  pill triggers a mobile-phone call. HP, meanwhile,
  is working on wearable wireless sensors, the size
  of sticking plasters, that could be used for
  remote monitoring of heart activity and other
  information. The idea behind all of these
  monitoring systems is to allow old people to
  remain in their own homes for as long as
  possible, even when they are being treated for
  chronic illnesses, rather than moving into a
  nursing home. (The Economist, June 9, 2005)

37
Finally.

• Virtual Checkups on the Rise
• The technology can be as basic as kiosks Wilson
  uses, which transmit blood pressure and weight
  readings to a remote facility monitored by a
  nurse. On more sophisticated devices, live
  doctors pop up on a screen to listen to
  everything from a patients heartbeats to lung
  waves. Some machines let patients dangle a camera
  over injuries so doctors can instruct them how to
  properly dress a wound. (Globe and Mail, March
  03, 2006)

38
A Hippocratic Oath for Digital Medicine

• Do no harm. A product must not make a computer
  harder to use, more unreliable or introduce new
  security problems.
• Do not mislead. No press releases overselling
  threats in general or in particular, no
  deliberate mixing of theoretical problems with
  real danger, and no surveys. Leave those to the
  independents and the industry groups. And no
  hidden costs be free or be up front.
• Keep your promises. Safety from new threats
  requires rapid, accurate and swiftly disseminated
  responses.
• Innovate relentlessly. Malware is constantly
  evolving you must be prepared to meet it head on
  just never at the expense of the first three
  rules.
• comment.zdnet.co.uk/other/0,39020682,39193315,00.h
  tm

39
Some General Concerns

• Obtaining faulty medical information online and
  possibly causing harm.
• Buying drugs of unknown quality online.
• Excessive e-mail messages to health care
  givers.
• Loss of personal privacy by providing
  information to medical sites.

40
PRIVACY PROTECTION IN CANADA

• Privacy as a Fundamental Right
• Privacy, the Canadian Supreme Court has said, is
  at the heart of liberty in a modern state, and
  the limits the Charter imposes on government to
  pry into the lives of its citizens go to the
  essence of a democratic state.
• the right to be let alonethe most comprehensive
  of rights and the right most valued by civilized
  men. (Justice Louis D. Brandeis, US Supreme
  Court, 1928)

41
A Definition for the Information Age

• Privacy is the claim of individuals, groups or
  institutions to determine for themselves when,
  how, and to what extent information about them is
  communicated to others.
• Alan Westin, Privacy and Freedom (New York
  Atheneum Publishers, 1967), p. 7.

42
Canada Personal Information Protection and
Electronic Documents Act (PIPEDA)

• Three Stages of Implementation
• Stage 1. As of January 1, 2001, the Act applied
  to every organization which operates as a federal
  work, undertaking or business.
• Stage 2. On January 1, 2002, the Act applied to
  personal health information.
• Stage 3. From January 1, 2004, the Act applied to
  every organization that collects, uses or
  discloses personal information in the course of
  commercial activity within a province.

43
BC and Alberta Personal Information Privacy Acts

• On October 12, 2004, the federal Cabinet
  exempted any organization to which BCs PIPA
  applies from application of the federal PIPEDA
  in respect of the collection, use and disclosure
  of personal information that occurs in the
  Province of British Columbia.
• BC PIPA took effect on November 10, 2004.

44
Personal information

• Personal information includes any factual or
  subjective information, recorded or not, about an
  identifiable individual. This includes
  information in any form, such as
• name, age, weight, height
• medical records
• income, purchases and spending habits
• race, ethnic origin and colour
• blood type, DNA code, fingerprints
• marital status and religion
• education
• home address and phone number

45
The Law Gives You, the Individual, the Right to

• know why an organization collects, uses or
  discloses your personal information
• expect an organization to collect, use or
  disclose your personal information reasonably and
  appropriately, and not use the information for
  any purpose other than that to which you have
  consented
• know who in the organization is responsible for
  protecting your personal information

46
Rights Continued

• expect an organization to protect your personal
  information by taking appropriate security
  measures
• expect the personal information an organization
  holds about you to be accurate, complete and
  up-to-date
• obtain access to your personal information and
  ask for corrections
• complain about how an organization handles your
  personal information.
• http//www.privcom.gc.ca/information/02_05_d_08_e.
  asp

47
The Law Requires Organizations to

• obtain your consent when they collect, use or
  disclose your personal information
• supply you with a product or a service even if
  you refuse consent for the collection, use or
  disclosure of your personal information unless
  the information is essential to the transaction
• collect information by fair and lawful means
• have personal information policies that are
  clear, understandable and readily available.
• http//www.privcom.gc.ca/information/guide_e.asp

48
Exceptions

• There are exceptions to these principles. For
  example an organization may not need to obtain
  your consent if collecting the information
  clearly benefits you and your consent cannot be
  obtained in a timely way or if the information
  is needed by a law enforcement agency for an
  investigation, and getting consent might
  compromise the information's accuracy.

49
HEALTH PRIVACY ISSUES ON THE INTERNET

• Although health Web sites now provide a wide
  range of clinical and diagnostic information
  opportunities to purchase products and services
  interactions among consumers, patients, and
  health care professionals and the capability to
  build a personalized health record, they have not
  matured enough to guarantee the quality of the
  information, protect consumers from product fraud
  or inappropriate prescribing, or guarantee the
  privacy of individuals information.

50
Guarding Medical Secrets

• Dont tattle on yourself on marketing surveys,
  product registration cards, and forms for free
  health screenings.
• Think before registering on health Web sites or
  dialing toll-free numbers to ask about a new drug
  or an illness.
• How to Keep Prying Eyes Off Your Medical
  Records, Business Week, November 19, 2001, pp.
  130-2.

51
Continued

• Consider paying out-of-pocket for treatment when
  privacy is desired.
• Talk to your doctor and pharmacist about their
  privacy procedures.
• Edit the waivers on insurance forms so only
  information necessary to process your claim is
  released.

52
Continued

• Send in those opt-out forms from financial
  institutions (including insurers) that block
  information from being shared with third parties.
  
• That this heavy burden must be borne on a regular
  basis by individuals characterizes a society in
  which the apparent needs of government and
  business are placed ahead of the rights of
  individuals.

53
Privacy Issues Related to Medical Information

• Whoever, in connection with my professional
  service, or not in connection with it, I see or
  hear, in the life of men, which ought not to be
  spoken of abroad, I will not divulge, as
  reckoning that all such should be kept secret.
• Hippocratic Oath, circa 4th Century B.C.

54
Supreme Court of Canada

• Personal health information is personal
  information of a particular nature. The Supreme
  Court of Canada has characterized medical records
  as sensitive, highly private and personal to the
  individual.1 Moreover, the Supreme Court has
  recognized that the therapeutic relationship is
  trust-like in nature and is one in which patients
  have a high expectation that their personal
  information will remain confidential. As a
  result, the individuals maintain a fundamental
  interest in controlling the dissemination of that
  personal information, especially, as the Supreme
  Court has said, where aspects of the individuals
  identity are at stake.2
• 1 McInerney v. MacDonald, 1992 2 S.C.R. 138, p
  148.
• 2 R. v. Mills (2000), 180 D.L.R. 1, p. 46.

55
The Privacy Commissioner of Canada

• Personal health information stored in electronic
  systems is becoming fair game for bureaucrats,
  researchers, as well as insurance and
  pharmaceutical companies, among others. Many such
  organizations are already surreptitiously
  collecting and using personal health information
  without even the courtesy of telling us that our
  lives are being categorized and our records
  dissected.
• Privacy Commissioner of Canada, Annual Report
  1999-2000, May 2000, p. 32. Available at
  http//www/privcom.gov.ca

56
Concern

• Privacy, confidentiality and security are among
  the most pressing concerns of Canadian citizens
  as the knowledge-based economy and society
  emerge. These issues are of special importance in
  the field of health, where protecting personal
  information related to health status, ensuring
  traditional doctor-patient confidentiality in
  telehealth sessions, and safeguarding the
  networks that connect the parts of the health
  system have to be given special priority.
• Health Canada, Statistics Canada, Health
  Information Roadmap Beginning the Journey
  (Canadian Institute for Health Information
  Ottawa, 1999) at 6.

57
Uses of Medical Information

• There have been arguments that personal health
  information can be used for medical research,
  both public and private, administrative purposes
  to measure efficiency and to identify problems
  and opportunities for improvement, and medical
  emergencies, such as epidemics, without obtaining
  explicit permission.
• There is a concept of implied consent that
  suggests that all of these purposes and more are
  implied in the initiation of a medical record.

58
Continued

• Therefore, it is argued by some (many?) that if
  identifying information is removed, the medical
  record can be used for all the above purposes and
  more.

59
Continued

• However, if this information is de-aggregated,
  linked or data-matched, or where sample sizes are
  small, even information which is non-identifiable
  on its face may allow individuals to be
  identified.
• Non-identifiable or aggregate health information
  may also raise privacy concerns where it targets
  a group of individuals who may be distinguished
  and possibly discriminated against - on the basis
  of race, age, sexual orientation, area of
  residence or other identifying characteristics.

60
ITEM

• Canadian Medical Association's chief concern with
  Bill C-6 is the inadequacy of its provisions to
  protect the right of privacy of patients and the
  confidentiality of their health information. The
  right of privacy encompasses both the right to
  keep information about ourselves to ourselves if
  we so choose and to exercise control over what
  subsequently happens to information we confide in
  trust for the purpose of receiving health care.
  In recent years, this right, and the ability of
  physicians to guarantee meaningful
  confidentiality, have becoming increasingly
  threatened.
• Executive Summary, Putting Patients First
  Comments on Bill C-6, Submitted to The Senate
  Standing Committee on Social Affairs, Science and
  Technology. November 29, 1999. http//www.cma.ca/a
  dvocacy/political/1999/112D29/executive.htm

61
Recommendation (Mine)

• All health information records should receive
  uniform coverage under a single law to provide
  adequate protection for all Canadians,
  independent of where they receive health
  treatment. A seamless system of protection is the
  ideal, whether the coverage falls under
  provincial or federal jurisdiction or private or
  public treatment. It is not and should not be the
  concern of the individual to determine under what
  conditions his or her medical records receive
  full protection under the law.

62
Medical Research and Privacy

• Optimal and humane medical care requires trust
  and privacy and confidentiality. No one but the
  patient has the right of access to personally
  identifiable medical information. Except for a
  public health urgency, no personally identifiable
  medical information should be released to anyone,
  particularly the government, without the
  knowledge and consent of the patient (or
  authorized agent). Particularly in these
  "electronic times," carefully constructed
  legislation is sorely needed to effect this
  protection of patients' individual rights.

63
Contd.

• Research, which while of great importance, is
  secondary to individual rights. It can be carried
  on apace by accommodating its designs to the
  protection of rights of privacy, just as is done
  with clinical care.
• Dr. H. E. Finkel, Clinical Professor of Medicine
  at Boston Medical Center, as quoted in
  Massachusetts Medical Society Policy on Patient
  Privacy and Confidentiality (1999). Accessed from
  the Web page with URL http//www2.mms.org/pages/p
  rivacy_policy.asp

64
Four Major Current Issue Clusters

• Secondary research use of data, and data linking
• As databases are maturing and increasing in
  size and quality, their appeal as research
  resources also is growing. Thus the databases of
  healthcare finance systems and managed-care
  organizations, among others, are much in demand.

65
Contd.

• Research on private-sector health data
• Immense volumes of personally identifiable
  data and lightly masked key-coded data, as well
  as effectively key-coded or anonymized data, are
  handled by managed-care organizations,
  pharmaceutical and related companies, and other
  private-sector institutions. Some State legal
  controls apply, as do the Privacy Act and Federal
  laws where there is Federal involvement.

66
Contd.

• Cyber-security
• It is not an exaggeration to say that all
  over the world, the protection of the
  confidentiality and security of health data,
  especially data that are stored, processed, and
  transferred electronically, is under review.
  Until the several intersecting (and perhaps
  conflicting) goals are clarified and these
  problems are resolved, the envisioned future of
  lifetime electronic medical databases, elaborate
  health-data networks, and the like, will not be
  realized.

67
Contd.

• Genetic privacy
• As the news media are constantly reminding
  us, the world has entered an entirely new era in
  genetics The human genome has been mapped,
  incredibly sensitive and precise genetic tests
  have been developed, genetic screening has become
  commonplace, and a most incredible array of
  genetic interventions is being explored. As an
  area of medicine and public health practice, so
  much of the new genetics work is so innovative
  that for many purposes it must be considered
  "research."

68
Another Example

• Implanted Patient-Data Chips
• The two D.C. residents are among just a handful
  of Americans who have had the tiny electronic
  VeriChip inserted since the government approved
  it two years ago. But the chip is being
  aggressively marketed by its manufacturer, which
  is targeting Washington to be the first
  metropolitan area with multiple hospitals
  equipped to read the device, a persuasive factor
  for Fischer and Hickey. Within weeks, the first
  hospital is expected to announce plans to start
  routinely scanning all emergency-room patients.
• Rob Stein, Use of Implanted Patient-Data Chips
  Stirs Debate on Medicine vs. Privacy. Washington
  Post, March 15, 2006, A01.

69
Contd.

• Some doctors are welcoming the technology as an
  exciting innovation that will speed care and
  prevent errors. But the concept alarms privacy
  advocates. They worry the devices could make it
  easier for unauthorized snoops to invade medical
  records. They also fear that the technology marks
  a dangerous step toward an Orwellian future in
  which people will be monitored using the chips or
  will be required to have them inserted for
  surveillance.

70
Finally.

• The devices, originally developed to track
  livestock, have been implanted in more than 6
  million cats and dogs to trace lost or stolen
  pets. For medical identification, the device -- a
  microchip and a copper antenna encased in a glass
  capsule about the size of a grain of rice -- is
  inserted, usually under the skin on the back of a
  patient's arm, in a quick, relatively painless
  procedure. Each unit, which lasts indefinitely,
  transmits a unique 16-digit number that can be
  read by a handheld scanner. The number is used to
  locate a medical record previously stored on a
  secure Web site.

71
GENETIC INFORMATION

• Genetic analyses and interventions have
  exceedingly sensitive attributes
• They broadly relate to health, to qualities of
  life, and to sense of fairness in the lottery of
  birth and treatment of the disadvantaged.
• They relate to race, ethnicity, and parentage.
• They relate to gender (and maybe to sexuality).

72
Contd.

• They relate to mental competencies and
  tendencies, and to behavioral predispositions.
• They have relevance for descendants, and
  therefore possibly to reproductive choices.
• William W. Lowrance, Privacy and Health
  Research, Office of the Assistant Secretary for
  Planning and Evaluation, U.S. Department of
  Health and Human Services, May 1997, Section 7.
  Major Current Issue Clusters. Available at
  http//aspe.hhs.gov/datacncl/PHR.htmContents

73
Other Concerns

• The requirement to undergo genetic testing in
  order to obtain a job or to maintain one is an
  invasion of privacy, and that invasion of privacy
  is further aggravated when the results of such
  tests are not under the control of the worker.
• In the U.S. context, medical insurance companies
  could find genetic information invaluable,
  because a serious illness, that could be
  predicted by a genetic test, might be enough to
  terminate the medical insurance policy of a small
  firm, given that expenditures for that one case
  might be exorbitant.

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Definition of Consent in the CMA Privacy Code

• Consent means a patient's informed and voluntary
  agreement to confide or permit access to or the
  collection, use or disclosure of his or her
  health information for specific purposes.
• CMA Health Information Privacy Code (1998)
  Approved by the CMA Canadian Medical
  Association Board of Directors, August 15, 1998.
  Accessed from the Web page with URL
  http//www.cma.ca/inside/policybase/1998/09-16.htm
  

75
Continued

• Express consent is given explicitly, either
  orally or in writing. Express consent is
  unequivocal and does not require any inference on
  the part of the provider seeking consent.
• Implied consent arises where agreement may
  reasonably be inferred from the action or
  inaction of the individual and there is good
  reason to believe that the patient has knowledge
  relevant to this agreement and would give express
  consent were it sought.

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Informed Consent My Comments

• My basic argument is that the individual must
  give informed consent for the collection, use and
  disclosure of his or her medical records or for
  other personal information as well.
• Cost and difficulty in obtaining such permission
  are not sufficient reasons to ignore this
  principle.
• Only in very special cases, such as incapacity
  and life-threatening emergencies, can it be
  abrogated.

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Contd

• While recognizing the importance of personal
  medical information to medical research, it
  cannot be assumed that such information is
  automatically available without permission.
• Other costs of research are factored into
  research budgets so must be privacy concerns.

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CONCLUSIONS PRIVACY

• The conclusions will include the following
  recommendations
• Recommendation 1 The right to, and the
  protection of, health information privacy must be
  established as a basic human right.
• Recommendation 2 Separate legislation for health
  privacy protection may be necessary. Given that
  medical information is of such a special
  character, it requires protection, which may be
  lacking in general privacy legislation.
•  

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Continued

• Recommendation 3 The Canadian Medical
  Associations Health Information Privacy Code
  should form the basis for forthcoming federal
  legislation. Provinces are also encouraged to
  take advantage of this Code as well, in
  formulating their own legislation, if they so
  desire.
• Recommendation 4 Adequate penalties must be
  levied for violations of the regulations and the
  role of the Privacy Commissioner of Canada must
  be expanded for the purposes of monitoring the
  operation of the legislation.

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Finally.

• Recommendation 5 In addition, the Privacy
  Commissioners responsibility to investigate and
  adjudicate complaints must be expanded to
  publicize the outcomes of these investigations.
• Recommendation 6 Furthermore, the responsibility
  of the Office of the Privacy Commissioner to
  educate Canadians about their privacy rights in
  general and their health information rights in
  particular, requires that the budget be adequate.
  

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Coalition for Patient Privacy

• We urge you to build a foundation for medical
  information technology that is based on the
  following longstanding ethical and privacy
  principles and protections
• Restore the patient's right of consent 
• Give patients  the right  to opt-out of having
  their records in any national or regional
  electronic health system
• Give patients the right  to segregate their most
  sensitive medical records 

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Finally.

• Require audit trails of all disclosures 
• Deny employers access to medical records 
• Require that patients be notified of all
  suspected or actual privacy breaches 
• Preserve stronger privacy protections in state
  laws 
• Enact meaningful enforcement and penalties for
  privacy violators
• www.patientprivacyrights.org/site/PageServer?pagen
  ameCoalitionSignOnLtr

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Genetic Privacy

• To Protect Personal Genetic Information (PGI) in
  the US, use the Safe Harbor Principles
• 1. The notice principle. An organization must
  clearly notify people at the point of PGI
  collection about all of the ways the organization
  may use the PGI, and what options people have to
  limit such uses.
• 2. The choice principle. Organizations must
  obtain from people their explicit consent to
  collect and use their PGI, and they must clearly
  notify them of the consequences they could face
  if they decline to provide consent.

84
Cont.

• 3. The onward transfer principle. Organizations
  must not transfer PGI to other organizations
  without the consent of the person and without
  ensuring that the organization protects the
  information with the Safe Harbor standards.
• 4. The access principle. Organizations must offer
  people an easy means of reviewing the PGI that
  has been collected about them and the conclusions
  that were drawn from that information.
• 5. The security principle. Organizations must use
  the highest standard of due care to protect PGI
  from unauthorized access and alteration.

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Finally.

• 6. The data integrity principle. Organizations
  must limit the collection of PGI for only
  relevant purposes and take steps to ensure its
  accuracy.
• 7. The enforcement principle. Organizations must
  adopt independent methods to verify their
  adherence to these principles and provide people
  an independent means to issue complaints about
  the organization's PGI practices.
• Jay Cline, Next on Your Agenda Genetic Privacy.
  Computerworld, Jan. 23, 2006.

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CONCLUSIONS REMAINING

• The impact of computers on medicine has been
  great, to say the least.
• Research and medical practice have benefited
  enormously.
• The impact of genetic research is almost
  impossible to evaluate.
• Some commentators have expressed concern that an
  increasing use of technology in the medical
  delivery system will lead to dehumanization of
  the doctor-patient relationship.

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Finally.

• Large expenditures for medical technology have
  also been criticized as an allocation of
  resources away from the important needs of
  preventive care.
• The linking of computers to communication
  systems and to physical manipulators has provided
  new opportunities for disabled people to escape
  the boundaries of their beds and homes.