Public Health Surveillance
 Public health surveillance is the ongoing, systematic
collection, analysis, interpretation, and dissemination
of data regarding a health-related event for use in
public health action to reduce morbidity and mortality
and to improve health
 Centers for Disease Control and Prevention. Updated Guidelines for Evaluating Public
Health Surveillance Systems. MMWR 2001; 50(RR13); 1-35.
Uses of Surveillance Systems
 measure the burden of a disease, including the
identification of populations at high risk and the
identification of new or emerging health concerns;
monitor trends in the burden of a disease; (trends in
guide the planning, implementation, and evaluation of
programs to prevent and control disease;
evaluate public policy;
detect changes in health practices and the effects of these
prioritize the allocation of health resources;
provide a basis for epidemiologic research.
From NCI’s surveillance
research branch
 Cancer surveillance provides a quantitative portrait of
cancer and its determinants in a defined population.
…. It also includes the assessment of genetic
predisposition …. Cancer surveillance tells us where we
are in the effort to reduce the cancer burden and also
generates the observations that form the basis for
cancer research and interventions for cancer
prevention and control.
 From the Futures Report, September 2001, a collaboration among the National Cancer
Institute, the National Center for Health Statistics, the Centers for Disease Control and
Prevention, the American Cancer Society, and the North American Association of Central
Cancer Registries.
 Research means a systematic investigation, including
research development, testing and evaluation,
designed to develop or contribute to generalizable
 45 CFR 46.102(d). Downloaded 2/21/2012 from
Difference lies in purpose
 Research – generalizable
 May be translated to
population health
Surveillance – prevent or
control disease and
improve health, control a
health problem in the
population from which the
information is gathered
May generate generalizable
 Centers for Disease Control and Prevention. Policy on Distinguishing Public Health
Research and Public Health Nonresearch. Downloaded 2/21/12 from
Why does it matter?
 Clarification of goals, questions
 Funding agency regulations and goals
 Public health surveillance and research covered under
different regulations
Previously Identified Data Goals
 Monitor HP 2020 objective to increase the proportion
of cancers screened
 Collect data demonstrating cost effectiveness of LS
screening, for institutional and state funding purposes
(newborn screening model)
 Measure identification of LS over time
 Data for educational/awareness purposes
 Promote appropriate institutional and provider
 Provide data to Medicaid/Medicare in support of
Previously Identified Q’s
 Prevalence of LS mutation in patients with various
cancer types – is screening appropriate?
 What family history is associated with mutation?
(develop screening recommendations)
 What is the estimated frequency of LS associated
 Can we confirm the prevalence of LS?
 What is the number of Medicaid/Medicare patients
identified with LS?
More Q’s …
 Average number of family members identified via
cascade screening?
 What proportion test mutation positive after screening
positive under various screening protocols?
 What proportion of individuals identified with LS do
not meet Bethesda or Amsterdam criteria?
 What is the penetrance of LS for various cancers?
 Any more? Can we prioritize Q’s and goals?
Examples from Michigan
 BRCA counseling/testing database funded by CDC
 All work is aligned with goals of cooperative agreement
 Clinical sites cannot access other institution’s raw data
 Sites can submit proposals for analyses – reviewed by MI
Dept. of Community Health Staff
 Authorship depends on proposals, contribution to
 Michigan Stroke Registry and Quality Improvement
Program - similar
LSSN Publications/Analysis
 Who should be on it?
 Clinical expertise
 Analytical expertise
 Data contributing members
 Non-contributing members
 Funding agencies
 Outside stakeholders
 How to prioritize requests/determine suitability of
 Established priorities & criteria will be helpful
LSSN Analysis Proposals
 Institutions will have access to their own data
 Should there be access to aggregate raw data (vs.
results of an analysis)?
 Different levels of access?
 Who should be able to submit proposals/author
 Contributing, non-contributing LSSN institutions?
 Outside investigators?
 Students?
 Will it cost $$$ to access raw or aggregate data?
Uniform Requirements for Manuscripts Submitted to Biomedical
Journals: Ethical Considerations in the Conduct and Reporting of
Research: Authorship and Contributorship
( Authors should meet
conditions 1, 2, and 3.
 Substantial contribution to conception and design,
acquisition of data, or analysis and interpretation of
data; AND
 Draft the article or revise it critically for important
intellectual content; AND
 Give final approval of the version to be published
Authorship in LSSN
 Based on # contributed to database?
 A certain number of representatives from each
 Based on analysis proposals? (Who gets to propose
analyses related to LSSN’s established questions and
 Limit the # of papers a LSSN member can author?
 What about acknowledgements?
 Acknowledge each institution contributing data to
that analysis and publication?
 Acknowledge individuals vs. contributing institution
 Just put in link to LSSN website? Or name LSSN in
some other way?