CASE District VII Conference
Anaheim, CA
December 8 – 10, 2002
“The Method and the Magic:
Ethics and Information Management”
Micheal Seymour, Presenter
Healthcare and medical non-profits privacy:
Get a grip on HIPAA
I. Foundations for Privacy and Confidentiality
in Healthcare / Medicine
A. The Hippocratic Oath
B. Moral and Political Aspects of Privacy and
Confidentiality
II. HIPAA
A. Definition and Scope
B. Goals
C. Background on Regulations
D. Important and Relevant Terms
E. Fund Raising Issues
F. What the regulations fail to address
G. Impact on fundraising and how to succeed
despite HIPAA
III. Conclusion
Foundations for Privacy and Confidentiality
in Healthcare / Medicine
The Hippocratic Oath
“What I may see or hear in the course
of the treatment or even outside of the treatment in regard to the life of
men, which on no account one must spread abroad, I will keep to myself, holding
such things shameful to be spoken about.”
The BIG question: Is giving patient
information to a fundraiser violating the Hippocratic Oath ?
Moral and Political
Aspects of Privacy and Confidentiality
American Medical Association (AMA) Code
of Ethics -- there are multiple versions, but it was originally adopted
in 1957.
American
Psychiatric Association Code of Ethics – 1987
American
Hospital Association -- adopted “A Patient’s Bill of Rights” in 1973
World
Medical Association -- ethical code adopted first adopted in 1948
If confidences are not kept, patients
will not be forthcoming with information, which may impact treatment and
medical care
HIPAA
[Health Insurance Portability and Accountability Act]
(also known as “Patient Privacy
Rules”)
Definition and Scope
HIPAA is the most sweeping and intensive
legislation to affect healthcare and medicine since Medicare in 1965.
Nearly everyone involved in healthcare and medicine will be affected in some
way:
Healthcare providers (doctors,
hospitals, clinics)
Payors (insurance
companies)
Employees
Clearing Houses
Practice Management system vendors
Billing Agents
Service Organizations
Goals
-
Ensure access to and the portability of healthcare insurance [this was the
impetus of the legislation]
-
Reduce healthcare fraud and abuse
-
Simplify and standardize electronic administrative processes
-
Guarantee security and privacy of health information [this was the primary
concern by the public as well as legislators]
Background on Regulations
In the past,
no federal laws existed on the books governing patient privacy. Existing
state laws vary widely, with many states having more stringent laws than
the federal guidelines from the Department of Health and Human Services [HHS].
*
If a state law provides greater protection than the baseline provided
in HIPAA, then the stronger state law would prevail.
The objectives of the legislation
were to:
Improve efficiency by standardizing
electronic data interchange thru standardized formats, code sets, language,
and unique health identifiers
Reduce costs
Ensure security and privacy of healthcare transactions and information
Fund raising is mentioned in only
8 paragraphs in the HIPAA Final Rules, which is over 1,000 pages.
Specific to fund raising, HIPAA
seeks to regulate patient privacy through the restricted use of protected
health information (PHI) for fund raising purposes.
Privacy Rule enforcement begins
April 14, 2003
Implementation and enforcement will
be handled out of the Office of Civil Rights within the Department of Health
and Human Services (DHHS)
Civil and criminal penalties for
non-compliance range from $100 to $250,000 per offense and up to 10 years
imprisonment
Important and Relevant Terms
Covered entities:
all health care providers, health plans and clearing houses which maintain
patient data.
Protected Health
Information (PHI): all individually identifiable health
information and other information on treatment and
care that is transmitted
or maintained in any form or medium (electronic, paper, oral, etc…)
Protected Health Information is
owned by the patient. HIPAA gives patients rights as to how their PHI
is used:
- right to a copy of The Notice
of Privacy Practices
- right to access, inspect and copy
one’s PHI
- right to request restrictions
of disclosures
- right to amend one’s PHI
- right to an accounting of disclosures
- right to authorize non-routine
disclosures
Individually
Identifiable Health Information: a subset of PHI, including demographic
information collected from an individual.
Consent:
the communication process between caregiver and patient, referring to the
use or disclosure of protected health information (PHI) to carry out treatment,
payment or health care operations.
Authorization:
the mechanism for obtaining consent from a patient for the use and disclosure
of health information for a purpose that is not treatment, payment or health
care operations. For example, a written authorization is needed before
a patient’s health information can be included on a list for marketing purposes.
Authorization:
- is a customized document that
gives a Covered Entity permission to use
PHI for specific purposes
- covers only uses and disclosures
of PHI stipulated in the authorization
- contains an expiration date
- may also state the purpose for
which the information may be used or disclosed
Authorization is NOT required if:
- fund raising for own benefit
AND
- use or disclosure for fund raising
purposes is included in the Covered
Entity Notice AND
- an individual may opt-out of receiving
fund raising materials AND
- the Covered Entity only using
an individual’s demographic information AND/OR
- dates of health care service
In the initial
draft of the HIPAA regulations…
-
Marketing and fund raising were grouped together and were not considered
part of “health care operations.” Access to all PHI, including demographic
data, is required prior authorization.
-
Limited to computer access and transmission of patient data. It did
not address hardcopy or personal communication of patient data.
In the final draft of the HIPAA regulations…
-
Marketing and fund raising are separate functions and are considered
part of “health care operations.” There is limited access to PHI, and
other data might require authorization.
Fund Raising Issues
-
Almost 90% of funds raised at major medical centers come from grateful patients,
who are referred by their physicians, who want to usually give to areas of
interest (most often their treatment area) and who are approached by development
officers
-
Physician involvement and interaction is critical for successful fund raising
-
Campaign fund raising targeted by groups by physician or treatment area will
be limited
-
Under the current proposed HIPAA guidelines, the most basic fund raising
practices (physician referrals and major gift appeals) will be administratively
challenging, expensive and largely less effective, requiring a signed authorization
What the regulations fail to address
The application in disease-specific
institutions (e.g., Cancer Centers, Physchiatric Hospitals) where access
to patient name and address constitutes, de facto, access to a patient’s
disease/prognosis
The application in institutions
with de-centralized registration systems (i.e., separate data systems for
various departments and units)
Development Office access to other
non-medical PHI (such as occupation, employer, next of kin / spouse information)
Impact
on fundraising and how to succeed despite HIPAA
HIPAA classifies
healthcare fund raising as a “healthcare operation” and allows fundraisers
to use the information listed below without an authorization:
i. demographic information relating
to an individual and
ii. date(s) of healthcare service
provided to an individual
|
Approved data
|
Not Approved data
|
Name
|
Diagnosis
|
Address
|
Treatment or nature of services
|
Other contact info (phone, e-mail, fax)
|
Name of the department or divisionof the covered
entity where the patient received
treatment
|
Age (birthdate)
|
Name / specialty of the physician
|
Gender
|
Social Security Number
|
Insurance status
|
|
Date(s) of service(s)
|
|
|
NOTE: any use of this information
would require signed
authorization by the patient
|
The Association for Healthcare Philanthropy
(AHP) has been diligently monitoring the legislation and is seeking to positively
impact the outcome.
Besides demographic data and date(s)
of service, AHP is lobbying to add the following data element:
iii. the physician, department,
or division on the covered entity from which
the individual received treatment
NOTE: This
would describe only the area of the hospital / medical center where the
patient receives(ed) treatment,
and the name and/or specialty of the treating physician. It does
NOT include information related to a patient’s specific disease, diagnosis
or treatment.
Direct mail communications can no
longer be “targeted” to specific patients / patient families for specific
diseases (e.g. – diabetes patients). In the past, these targeted
appeals (signed by the Department Chief) have been extremely successful with
regards to donor acquisition.
AHP (Association of Healthcare Philanthropy)
and AAMC (American Association of Medical Colleges) are currently petitioning
the Department of Health and Human Services on this issue.
With regards to major gift fund
raising, patients cannot be proactively identified as prospects for specific
departments. This will make it more difficult for Major Gift officers
to have department-specific fund raising goals and strategies
New restrictions on the communication
between physician and the Development staff will have to happen. The
physician cannot bring a patient name to the Development office anymore unless
the patient has given prior authorization.
In order for us to be success in
fund raising, Development must take an active role in their institution’s
formulation of a clearly articulated authorization statement. One example:
The General Counsel’s Office at Johns Hopkins Medical Center has been very
proactive in this area. This authorization can also serve as
a “mini mission statement” making the case for support of your organization.
This legislation will require greater
cooperation and integration of Annual Fund operations and Major Gift operations.
Volunteer leadership will be absolutely
essential as a source for proactive identification of potential new donors.
Once a patient becomes a donor to a specific area, you can then move them
along for larger gifts.
It will also mean continued education
for physicians with regards to the overall Development process.
Conclusion
HIPAA and privacy issues are here
to stay and need to be addressed.
Hospitals and medical centers will
face many complex issues regarding compliance with the regulations, and no
one wants to be the first “test case” for non-compliance.
HIPAA regulations will require more
creative ways for the development staff to identify prospects.
Departmental funding priorities
will be largely donor-driven.
Development will need to be more
committed to educating unrestricted donors on a wide range of funding opportunities.
Web sites for
further information:
http://www.hhs.gov/ocr/hipaa/
http://www.afpnet.org.resource_center/hot_topics
The Final Regulations available
at:
http://aspe.os.dhhs.gov/admnsimp/
http://www.hipaadvisory.com/
http://www.ucsf.edu/hipaa/HIPAAUpdate-Sept2001/
Source materials were adapted from
presentations by:
“Healthcare Issues” Panel
Discussion” by Mark A. Cotleur and Mark P.
Aulisio, Ph.D.
(APRA International Conference August 2002)
“Ready or Not – Here comes HIPAA”
by Suzanne Szalay
(CARA Seminar Day
October 2002)