Can We Assure Confidentiality In Health Care
Services For Adolescents And Young Adults?
The Potential Impact Of The Affordable Care Act Insurance
Provisions On A Vital Patient Right
Claire D. Brindis, Dr.P.H.
Professor of Pediatrics and Health Policy
National Adolescent and Young Adult Information Center
and
The Philip R. Lee Institute for Health Policy Studies
University of California, San Francisco
September 11, 2013
Special Thanks!
M. Jane Park, MPH, Kathleen Tebb, PhD, Charles E. Irwin, Jr., MD, & Elizabeth Ozer,
PhD, Linda Ha, and Jazmyn Scott, MPH
National Adolescent and Young Adult Health Information Center
Division of Adolescent and Young Adult Medicine
Department of Pediatrics
University of California, San Francisco
Abigail English, JD
Center for Adolescent Health and the Law
Trina Anglin, MD, PhD
Maternal and Child Health Bureau
Health Resources and Services Administration
3
Objectives
• To identify specific adolescent and young adult health needs.
• To describe the health care system’s capacity to respond to
these needs.
• To identify how expanded health insurance provisions,
including preventive health services, within the Affordable
Care Act (ACA) make it imperative to address issues of
confidentiality for adolescent and young adult health care
visits.
Health Issues of Adolescence & Young
Adulthood
 A unique opportunity to support adolescents to become more responsible for their
own health care, as part of their growing independence and transition into young
adulthood.
 The major health problems of late adolescence and early adulthood are
largely preventable.
 Many negative health outcomes are linked to behaviors that can be prevented.
 Few youths have serious impairment that interferes with daily functioning,
BUT
 Those with chronic conditions, including mental health disorders, must learn
to manage these conditions with increasing independence.
Trajectories
6
Critical Health Issues of Adolescence & Young
Adulthood Within a Developmental Context
Increasing independence in habits related to:
* diet, physical activity, and sleep.
* how they spend their time and form relationships (e.g., more opportunities to become engaged in
romantic and sexual relationships),
* use alcohol and drugs,
* to work, perform community volunteer service, to get into trouble with the law.
• Critical period to prevent chronic conditions of adulthood, in areas such as*:
•
•
•
•
Diseases related to tobacco use,
Obesity,
Dental caries,
Hearing loss.
*Adapted from the Healthy People 2020 Core Indicators for Adolescent and Young Adult Health
Critical Health Issues of Adolescence &
Young Adulthood
• Critical period for emergence of mental health concerns,
such as:
• Major depressive episodes;
• Suicide and suicide attempts.
• Substance use, including binge
drinking, use of marijuana & other
illicit drugs, and abuse of prescription
drugs).
Critical Health Issues of Adolescence &
Young Adulthood
• Violence, including homicide, fighting and
weapon carrying, and homicide.
• Motor vehicle crashes & drinking and driving.
• Reproductive & sexual health, prevent sexually transmitted
diseases, HIV/AIDS, and pregnancy.
CHANGING
Context
for
Young
Adulthood
10
Before ACA: Health Care Systems
Fell Short For Young Adults
•Among those with a past-year primary care visit, less than a third received
preventive services related to key health issues.
•Young adults have very high rates of ER visits – only the very young and the
elderly have higher rates.
•17% of young adults (ages 18-24) had a past-year unmet need for dental
health care (2010).
Fortuna et al, 2009, Irwin et al., 2009; CDC/NHIS 2010
Percentage of Visits During Which Preventive Counseling
was Provided to Young Adults, 1996 to 2006
All Specialties
Primary Care
Ob/Gyn
Any
30.6%
32.7%
33.6%
Injury
2.4%
3.1%
0.8%
Smoking
3.1%
4.2%
3.1%
Exercise
8.2%
9.4%
8.2%
Weight reduction
3.0%
3.8%
3.4%
Mental health
4.1%
4.2%
1.3%
STD/HIV
2.7%
2.6%
7.1%
Diet
10.0%
12.4%
12.4%
Adapted from “Ambulatory Care Among Young Adults in the US”, Fortuna, et al, 2009
Young Adults (19-29) experiencing past-year access
problems due to cost, 2011
Source: The Commonwealth Fund Health Insurance Tracking Survey of US adults, 2011
Unmet Needs: Mental Health
Past Year Treatment for Mental Health and Substance Abuse / Dependence
Problems among Those with Problem, by Age, 2010
% who received treatment
70
63.8
60
50
47.2
49.4
40
18-25
30
26-34
31
20
17.3
10
11
6.6
6
0
Serious Psychological Stress
Major Depressive Episode
Alcohol Abuse/Dependence
National Survey on Drug Use and Health, 2010
Drug Abuse/Dependence
Before ACA: Health Care Systems
Often Also Fell Short for Adolescents
• Only 40% of adolescents had a past-year well visit.
Among those, very few receive recommended preventive
services; rates were particularly low for Hispanics and females
(2001-2004).
• 54% of adolescents received care in a medical home (2007). This figure is even lower
for some populations:
46% among those with a mental health condition, and 35%
among those with both a physical health condition AND a
mental health condition.
• 8.3% of adolescents had a past-year unmet need for dental health care (2010).
Irwin et al., 2009; Adams et al., 2013; CDC/NHIS 2010
Obama signing Healthcare Reform Bill March
23, 2010
The Promise of the ACA
If fully implemented, the ACA has the potential to improve adolescent and
young adult health in at least three ways:
1. Increase the number of adolescents and young adults with insurance
coverage;
2. Increase access to preventive services among those with insurance; and
3. Improve health care access and information more generally.
Brief Health Profile of Young Adults:
International and Over Time
18
Who will receive preventive care services?
I am interested in finding out more about how the
implementation of the Affordable Care Act will
impact adolescent and young adult males regarding
preventative services and access to primary care
services.
Preventive Services as Part of the ACA
• No cost sharing in private health plans
• Scope
USPSTF grade A or B recommended services
Bright Futures recommended services for adolescents
CDC Advisory Committee on Immunization Practices
(ACIP) recommended vaccines
Services recommended in Women’s Preventive Services
Guidelines (IOM)
Limits of “No Cost” Preventive Services as Part
of the ACA
• Preventive Services – Coverage and Potential Limitations
– Screening
– Diagnosis
– Treatment
• Contraception
– All FDA approved methods
– Exclusion of coverage for some brands
– Religious exemptions & accommodations
Health Care
Reform
The Role of Confidentiality in
Adolescent and Young Adult Health
The Role of Confidentiality and Consent for Sensitive Services in
Assuring Adolescents’ and Young Adults’ Access and Use of
Health Care
• Confidentiality is a basic tenet of adolescent health care -- impacts
willingness to seek medical care, disclose sensitive information, and patient
ongoing retention.
• While many parents do know about their adolescents’ and young adults’
use of health care, for many, especially those at greatest risk, needed care is
foregone if confidentiality is not assured.
• “Time alone with their clinician” is recommended by health care
organizations as it also helps adolescents develop skills needed as they
transition into adulthood.
• Federal and State Laws impact protocols and practices within individual
health entities.
Source: National Resource Council/Institute of Medicine, 2008.
Confidentiality: Federal Standards Regarding Sharing of Health
Information - Health Insurance Portability and Accountability Act of
1996 (HIPAA)
A major goal of the Privacy Rule is to assure that
individuals’ health information is:
•Properly protected, while allowing the flow of health
information needed to provide and promote high
quality health care; and
•Protect the public's health and well being.
The Rule strikes a balance that permits important uses
of information, while protecting the privacy of people
who seek care and healing.
Source: (http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf
.
Confidentiality: Federal Standards Regarding Sharing of Health
Information - Health Insurance Portability and Accountability Act of
1996 (HIPAA)
In most cases, parents are the personal representatives
for their minor children:
* Parents can exercise individual rights, such as access
to the medical record, on behalf of their minor children.
* However, in certain exceptional cases, the parent is
not considered the personal representative.
* In these situations, HIPAA defers to the State and
other laws to determine the rights of parents to access
and control the protected health information of their
minor
children.
Source: (http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf
HIPAA and the Special Case of Minors
• If State and other law is silent concerning parental access
to the minor’s protected health information, a “covered
entity” (e.g., provider) has discretion to provide or deny a
parent access to the minor’s health information, provided
the decision is made by a licensed health care professional
in the exercise of professional judgment.
Source: http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf
State Laws and Minor Consent &
Confidentiality
 Minor consent laws and confidentiality protections vary
from state to state starting at age 12, covering a range of
sensitive services (mental health, substance use,
reproductive health).
 Contraceptive Services:
• 25 states and the District of Columbia allow all minors (12 and
older) to consent to contraceptive services;
• 21 states allow only certain categories of minors to consent to
contraceptive services;
• 4 states have no relevant policy or state law.
Confidentiality and Adolescents and
Young Adults – Emerging Issues
Privacy concerns likely important to young adults in enrollment and
provision of care, as well as through the insurance claim process:
 Sensitive services: Sexuality and reproductive health,
mental health, substance abuse, and dating and
intimate violence
 Other health issues
Billing and Insurance Claims – Issues for
adolescents, young adults and other patient groups
Billing & insurance claims may jeopardize confidentiality
– Eligibility and Enrollment – Point of Service Enrollment
– Explanation of Benefits (EOBs)
– Electronic Health Records (EHRs) (also often known as
Electronic Medical Records (EMRs)
Challenges to Confidentiality
 Most states do not have clear statutory or regulatory directives regarding
EOBs.
 Conflicts exist between the provision of state insurance laws governing
communications that occur in insurance claims process and state laws that
provide confidentiality protections for health care information.
Examples of reconciling EOBs and
Confidentiality-Focus New York
• New York does not require health plans to send an EOB if there is no
outstanding balance for the patient (e.g., patient pays required
copayments at the time of service and health plan covers balance of the
provider’s fee).
• For sensitive services, EOBs can be sent to patients, if patients specify.
• In the case of the ACA, where FDA approved birth control methods will be
made available without co-payment on the part of the patient, this
approach may be applicable. However, for other sensitive services, other
protocols may need to be established.
Examples of reconciling EOBs and
Confidentiality—Focus: New York
• New York and other states allow minors to consent to reproductive health
services, STI, mental health, alcohol and drug abuse services, and sexual
assault treatment.
• Mental Health and other health care providers may not disclose
confidential information without permission of the person who consented
to health care.
• Enrollment in Medicaid for family planning services can be based upon the
adolescent’s own income eligibility.
• Medicaid does not send EOBs for sensitive services.
Electronic Health Records (EHRs)
Great contribution to improving health care, but may make
medical records more accessible to parents; may find notes from
previous visits, such as family planning and STIs, even if EOBs are
not required.
Navigating Patient Confidentiality – A
Clinician’s Voice
I’ve been attending our hospital’s design meetings around utilizing a patient portal for our patients. We
have been notified by our IT team that we cannot filter out certain diagnoses or problems from the
information that patients, or parents, can access. We can filter out pregnancy test results and STI results.
However, all medications will be listed.
My question for all of you is, if you are utilizing a patient portal at your institution, how are you handling
avoiding inadvertent breaches of confidentiality?
We are planning on having patients obtain sole access to their patient portal, once they are 13 years of
age. But, what about the patient that presents to our Teen Clinic for birth control at age 12? If her parent
has access to the patient portal, then her mother could see the birth control pills listed on her medication
list, therefore informing the patient that the patient may be sexually active.
Thanks in advance for any information you can share with me. I’m thankful that my institution has invited
me to these planning sessions. Oftentimes, I am the lone wolf advocating for our teen patients’
confidentiality.
California Spotlight: Responding to State Confidentiality
Laws— Case Example - Kaiser Permanente
• Organization with a preventive health care focus for all ages.
• Family and Patient Friendly – balancing the needs of parents to ensure the
health of their children, while also balancing the recognized confidentiality
needs of adolescents and young adults.
• Systems built to reflect the requirements of state policy on access and
confidentiality.
• Importance of Adolescent Medicine and System Champions— help make
sure systems are legally compliant in a way that actually works in real
clinical life.
California Spotlight: Responding to State Confidentiality
Laws— Case Example - Kaiser Permanente
Protocols in place for multiple areas of operation:
o
o
o
o
o
o
o
Call Center
Online appointing
Lab
Pharmacy
Injection
Electronic Health Record
Billing
Ongoing system refinements as laws, protocols, and
requirements developed.
Confidentiality: Reconciling Federal and
State Laws
Several vendors of EHR/EMR systems state they are unable
to block the creation of Explanations of Benefits (EOBs) for
confidential care provided to youth.
Mailing these EOBs out to the household would be in
violation of Colorado state law. Many practitioners opt out
of entering coding for the provision of this type of care
which decreases the validity of data related to the types of
services being provided to youth.
What, if any, leverage does the federal government have
with these for-profit entities?
Protecting Confidentiality –
State Policy Example - California
• California bill (SB 138) prohibits health insurers/plans from sending EOBs and
other insurance communications regarding "sensitive services"
• Specifically, if the patient is a dependent on another’s policy, and is less than 26
years old, all such communications would be barred unless the patient authorizes
them.
• If the patient is NOT a dependent and under 26, there is no automatic barring of
sensitive communications, but if that patient submits a nondisclosure request,
the insurer will have to honor it.
• “Sensitive services" (e.g., prevention, counseling, diagnosis, and treatment
related to sexual and reproductive health, including HIV/AIDS, substance use, and
mental health) are considered “Preventive Services” under the ACA and
therefore must be provided without share of cost.
Planning for the Future
40
Forecasting
Prediction is always difficult, especially about the
future
Niels Bohr
Conclusion
• Adolescents and Young adults = populations with
significant health concerns, high rates of uninsured,
and relatively low rates of health care utilization
• ACA has potential to expand
– Health insurance coverage in private plans & Medicaid
– Access to important preventive, acute, and chronic care services
• Big challenges remain to ensure success in meeting
ACA’s promise for adolescents and young adults
Challenges to the Success of ACA
Adolescents and Young adults who:
• Do not enroll in health insurance,
• Live in non-Medicaid-expansion states and thus, do not
have access to ACA standards for prevention,
• Don’t avail themselves of prevention,
• Need, but do not seek sensitive services, as a concern
about confidentiality of care.
• Maintaining patient portals that assure confidential care provision---how
will these be sustained after ACA implementation?
Selected Sources/Resources
•
•
•
•
•
•
•
•
•
•
•
ACA preventive services URL: http://www.healthcare.gov/news/factsheets/2010/07/preventive-services-list.html
Adams SH, Newacheck PW, Park MJ, Brindis CD, Irwin CE, Jr. Medical Home for Adolescents: Low Attainment Rates for Those
with Mental Health Problems and Other Vulnerable Groups, Academic Pediatrics, 2013;13(2):113-121.
Centers for Disease Control and Prevention. National Health Interview Survey, 2010. [private data run]. Available at:
http://www.cdc.gov/nchs/nhis.htm.
English A et al. Confidentiality for Individuals Insured as Dependents: A Review of State Laws and Policies. New York: Guttmacher
Institute and Public Health Solutions, 2012, www.guttmacher.org/pubs/confidentiality-review.pdf
English A, Park MJ. The Supreme Court ACA Decision: What Happens Now for Adolescents and Young Adults? Chapel Hill, NC:
Center for Adolescent Health & the Law; and San Francisco, CA: National Adolescent and Young Adult Health Information Center,
2012, www.nahic.ucsf.edu
Fortuna RJ, Robbins B, Halterman JS Ambulatory care among young adults in the United States. Ann Intern Med. 2009;151(6):379385.
Irwin, CE, Jr., Adams SH, Park MJ, & Newacheck, P. (2009). Preventive care for adolescents: Few get visits and fewer get services.
Pediatrics, 123(4), e565-72.
Kaiser Family Foundation. State Health Facts – State Decisions for Creating Health Insurance Exchanges and Expanding Medicaid as
of May 2, 2013, http://kff.org/health-reform/state-indicator/state-decisions-for-creating-health-insurance-exchanges-and-expandingmedicaid/.
National Resource Council/Institute of Medicine. (2008). Adolescent Health Services: Missing Opportunities. Washington DC:
National Academies Press.
Substance Abuse and Mental Health Data Archive. National Survey on Drug Use and Health [NSUDH online database]. National
survey on drug use and health, 2010 data. Available at: http://www.icpsr.umich.edu/icpsrweb/SAMHDA/sdatools/resources
Tebb, K, Brindis, CD, Giordano, A, Combellick, S., Bausch, S, and Diaz A. A shifting Health Landscape for Adolescents and Young
Adults: Planning foe the Implementation of Federal Health Care Reform in New York. San Francisco, CA: Philip R. Lee Institute for
Health Policy Studies and Division of Adolescent Medicine, Department of Pediatrics, University of California, San Francisco;
December, 2012. http://healthpolicy.ucsf.edu