Running Head: INFORMATION TECHNOLOGY
Information Technology: A Tool in Managing Down syndrome
By
Sylvia Assiamah
Presented to
Dr. Nanya Philipsen
In partial fulfillment of the requirements of
NURS 505, Health Policy
Coppin State University
Helene Fuld School of Nursing
Graduate Nursing Program
04/19/2014
INFORMATION TECHNOLOGY
Statement of policy problem
During the 2014 Maryland General Assembly legislative session, Senator Middleton
introduced SB0654; a bill entitled “Health - Down Syndrome - Required Information”. The bill
(SB0654) seeks to authorize the Department of Health and Mental Hygiene (DHMH) to identify
specified information about Down syndrome on the department's web site and to also make this
information available to specific health care facilities and health care providers. These “entities
will then be required to provide patients, families and caregivers affected by Down syndrome,
specific information about the disease process, and management” (Duncan, 2014) .
Description of policy background
Generally, pregnant women who receive routine prenatal care during their pregnancy get
tested around 18-21 weeks .Despite prenatal testing to check for the diagnosis of Down
syndrome, currently, “no provision of law requires information to be given to expectant parents
who receive a prenatal test result for Down syndrome or parents of a child diagnosed with Down
syndrome” (Duncan, 2014). The Centers for Disease Control and Prevention (CDC), describe
“Down syndrome as a lifelong condition. Services early in life will often help babies and
children with Down syndrome to improve their physical and intellectual abilities” (CDC, 2013).
Hence ensuring that the right information is provided to patients and their families in a timely
manner may contribute to optimal outcome for the patient.
Rationale for being on Agenda
The traditional medical paradigm in which doctors were viewed as having answers to all
questions, has been shifting over to an increasing need for patient and or family self-awareness.
Physicians, patients and their families’ are increasingly turning to information technology to
educate themselves about their diagnoses. The “use of computerized systems and internet-based
information already make current knowledge accessible to practitioners and patients, so
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INFORMATION TECHNOLOGY
improving these channels and linking information sources to practitioners and patients through
electronic medical records (EMR) can diminish knowledge challenges” (White, 2008). The
provision of specific evidence-based information about Down syndrome on the DHMH website,
and to health care providers “may have a beneficial impact on health care costs and clinical
outcomes” (Grant & Middleton, 2009).
Stakeholders
The sponsors of SB0654 are Senators Middleton, Astle, Brinkley, Feldman, Glassman,
Kelley, Kittleman, Klausmeier, Mathias, Pugh, and Ramirez. These senators are individually
affiliated with either the democratic or republican party. They also represent diverse populations
of city or county residents in the State of Maryland. Other stakeholders of the bill are; patients
and family members of individuals affected by down syndrome.
Description of stakeholder interests, pro and con
The sponsors of the bill represent both democratic and republican party views. While
each sponsor may have a specific reason for supporting this bill, it is unclear what their
individual interests are. The fact remains though that, no current law exits to mandate healthcare
providers or the DHMH to provide current evidence based practice information to patients with
Down syndrome and their families. The advantage of this bill is that it provides’ patients and
families with and awareness of the disease management, and prognosis. Dealing with a chronic
lifelong disease can be tasking on individuals and their families, but knowing what to expect
through the journey can make the burden of the disease slightly manageable.
Policy goals /objectives goal
The intended goal/objective of this policy is to ensure that patients, families and health
care providers affected by Down syndrome, have evidence based practice information on
managing the disease. Currently, “many doctors are unable to provide accurate information about
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people with intellectual disabilities, and there appears to be inadequate interest in training new
physicians to overcome this gap” (Collier, 2012). If health providers are not well informed about
Down syndrome, they will not be able to educate and manage their patients’ diagnosis optimally.
More importantly, providing patients, family members, and or caregivers with specified
information about Down syndrome promotes a partnership between patients and their health
providers. The main goal is to make sure that “health care providers have complete and up-todate patient information about down syndrome whenever they need it” (Welebob, 2007).
Financial considerations
From a financial policy stand point, the proposed bill will not cost money to the local
state or small businesses. A fiscal policy analysis done reveals that potential cost of passing the
bill and final adoption as a law will have little to no effect on the department’s expenditure.
Duncan (2014) writes “DHMH expenditures increase minimally for translation services, as well
as printing and mailing costs; however, DHMH advises these costs can be absorbed with existing
budgeted resources” (p. 1).
Criteria to meet objectives
To ensure that the objectives of SB0654 are met, the bill was introduced to the Maryland
General Assembly during the 2014 legislative session. Legislators in the House of Delegates and
Senate had an opportunity to listen, review and amend the bill as necessary. Upon review of the
initial bill, the word “requiring” has been amended to “authorizing”. The revision of the word
requiring to authorizing, ensures that both the DHMH and health care providers are mandated to
duly provide specified information about Down syndrome
Evaluation of options based on criteria
The proposed bill identifies three different entities; DHMH, health care facilities, and
identified health providers. To attain the goals/objectives of the bill, a regulatory body should
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oversee the information that is provided to all three entities. According to Sheets et. al. (2011),
“healthcare providers should coordinate the message to ensure consistency in the information
provided to the family” (436). To ensure neutral and unbiased information, “clear guidelines are
needed regarding how to explain test results and review possible consequences and alternatives
with patients. Such guidelines, which could be disseminated by professional societies like ACOG
or the National Society for Genetic Counselors, should stress the paramount interest in providing
information”( Dixon, 2008).
Providing evidence based practice information on the DHMH website, should not
eliminate communication between health care providers and their patients. It is important that
healthcare providers and patients “speak loudly and clearly, with a unified voice, to address the
dehumanizing trends in their profession and insist that the move toward technological reform not
leave them with a nation devoid of physician healers” (Toll, 2012) . Proper implementation of
this bill “has the potential to enhance how primary care is delivered, improve the health of
Americans with regard to chronic conditions, and reduce related health care costs” ( Holtrop &
Summers, 2010).
Solution(s) recommended with evaluation statement on solution(s)
Technology is increasingly becoming an integral part of patients and their families’ lives,
“they are seeking instant access to information to improve their health and prevent further
ailments” (Jacobs, 2011). Therefore, making specific information about Down syndrome
available on the DMHH website will ensure that the information accessed by patients(s) and their
family member(s) is accurate and enhances quality patient care. In addition, authorizing health
care facilities and health care providers to provide specific information to families about Down
syndrome will ensure that the information is genuine and up to date with current practice
guidelines.
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INFORMATION TECHNOLOGY
It is important however, that the information provided on the DHMH website does not
overwhelm families. Hippman, Inglis and Austin, (2012) advocate that “it could be helpful to
parents for a clinician to explicitly articulate their understanding that the family may want to
know not just about the potential severity of the child’s down syndrome” (p. 41). The key
element is creating a balance between technical clinical language, and simple use of words to
educate patients and their families. According to Jadad and Enkin (2007) “information
technology can help humanity achieve optimal levels of health and well-being and transcend
cognitive, physical, institutional, geographical, cultural, linguistic, and historical boundaries”(p.
334).
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References
Centers for Disease Control and Prevention. (2013). Facts about down syndrome
Chen, J. (2013). Down syndrome. Medscape Reference
Collier, R. (2012). Surge in down syndrome prenatal testing anticipated. Canadian Medical
Association.Journal, 184(9), E449-50.
Duncan, L., R. (2014). Maryland General Assembly, Department of Legislative Services. Health
- down syndrome - required information Retrieved from http://mgaleg.maryland.gov/
2014RS/fnotes/bil_0004/sb0654.pdf
Dixon, D., P. (2008). Informed consent or institutionalized eugenics? how the medical
profession encourages abortion of fetuses with down syndrome. Issues in Law &
Medicine, 24(1), 3-59.
Grant, R., & Middleton, B. (2009). Improving primary care for patients with complex chronic
diseases: Can health information technology play a role? Canadian Medical
Association.Journal, 181(1), 17-8.
Hippman, C., Inglis, A., & Austin, J. (2012). What is a "balanced" description? insight from
parents of individuals with down syndrome. Journal of Genetic Counseling, 21(1), 3544.
Holtrop, J. S., & Jordan, T. R. (2010). The patient-centered medical home and why it matters to
health educators. Health Promotion Practice, 11(5), 622-628.
Jacobs, A. (2011). The evolution of healthcare education technology: The history of patient
education. Retrieved from http://www.healthtechtrends.com/tag/patient-education-2
Jadad, A. R., & Enkin, M. W. (2007). Transcending our limits. British Medical Journal, 334
Levenson, D. (2009). Talking about down syndrome. American Journal of Medical Genetics.
149A (4): vii-viii.
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Sheets, K. B., Crissman, B. G., Feist, C. D., Sell, S. L., Johnson, L. R., Donahue, K. C.,
Brasington, C. K. (2011). Practice guidelines for communicating a prenatal or postnatal
diagnosis of down syndrome: Recommendations of the national society of genetic
counselors. Journal of Genetic Counseling, 20(5), 432-41.
Toll, E. (2012). The cost of technology. JAMA, 307(23), 2497.
White, R. E. (2008). Health information technology will shift the medical care paradigm. Journal
of General Internal Medicine, 23(4), 495-9
Welebob, E. M. (2007). Health information exchange: Be knowledgeable, get involved. Nursing
Management, 38(10), 12-14.
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