Characteristics of Health Information Gatherers, Disseminators, and Blockers Within Families at Risk of Hereditary Cancer: Implications for Family Health Communication Interventions

Introduction: Primary care providers (PCPs) and oncologists lack time and training to appropriately identify patients at increased risk for hereditary cancer using family health history (FHx) and clinical practice guideline (CPG) criteria. We built a tool, “ItRunsInMyFamily” (ItRuns) that automates FHx collection and risk assessment using CPGs. The purpose of this study was to evaluate ItRuns by measuring the level of concordance in referral patterns for genetic counseling/testing (GC/GT) between the CPGs as applied by the tool and genetic counselors (GCs), in comparison to oncologists and PCPs. The extent to which non-GCs are discordant with CPGs is a gap that health information technology, such as ItRuns, can help close to facilitate the identification of individuals at risk for hereditary cancer. Methods: We curated 18 FHx cases and surveyed GCs and non-GCs (oncologists and PCPs) to assess concordance with ItRuns CPG criteria for referring patients for GC/GT. Percent agreement was used to describe concordance, and logistic regression to compare providers and the tool’s concordance with CPG criteria. Results: GCs had the best overall concordance with the CPGs used in ItRuns at 82.2%, followed by oncologists with 66.0% and PCPs with 60.6%. GCs were significantly more likely to concur with CPGs (OR = 4.04, 95% CI = 3.35–4.89) than non-GCs. All providers had higher concordance with CPGs for FHx cases that met the criteria for genetic counseling/testing than for cases that did not. Discussion/Conclusion: The risk assessment provided by ItRuns was highly concordant with that of GC’s, particularly for at-risk individuals. The use of such technology-based tools improves efficiency and can lead to greater numbers of at-risk individuals accessing genetic counseling, testing, and mutation-based interventions to improve health.

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Enabling Patients to Receive Clinical Practice Guideline Recommendations for Hereditary Cancer Risk Using Chatbots, Family History, Application Programming Interfaces (API), Ontologies, and Owlready2: System Description (Preprint)

10.2196/preprints.29289 ◽

2021 ◽

Author(s):

Jordon Bryan Ritchie ◽

Lewis Frey ◽

Jean-Baptiste Lamy ◽

Cecelia Bellcross ◽

Heath Morrison ◽

...

Keyword(s):

At Risk ◽

Clinical Practice ◽

Cancer Risk ◽

Clinical Practice Guideline ◽

Practice Guideline ◽

Hereditary Cancer ◽

Family Health ◽

Family Health History ◽

Health History ◽

Patients At Risk

BACKGROUND Identifying patients at risk of hereditary cancer based on their family health history is a highly nuanced task. Frequently, patients at risk are not referred for genetic counseling because providers lack time and training to collect and assess family health history. Consequently, patients at risk are not receiving the genetic counseling and testing they need to determine the preventive steps they should take to mitigate their risk. OBJECTIVE Enable patients to receive clinical practice guideline recommendations for their hereditary cancer risk based on their family health history with mobile friendly technology. METHODS We combined chatbots, web application programming interfaces, clinical practice guidelines, and ontologies into a web service oriented system that can automate family health history collection and assessment. We used Owlready2 and Protégé to develop a lightweight, patient-centric, clinical practice guideline domain ontology using hereditary cancer criteria from the American College of Medical Genetics and Genomics and the National Cancer Comprehensive Network. RESULTS The domain ontology has 758 classes, 20 object properties, 23 datatype properties, and 42 individuals and encompasses 44 cancers, 144 genes, and 113 clinical practice guideline criteria. So far, it has been used to assess over 5,000 family health history cases. We created 192 test cases to ensure concordance with clinical practice guidelines. The average test case completes in 4.5 seconds, the longest in 19.6 seconds, and the shortest in 2.9 seconds. CONCLUSIONS By engaging the chatbot, patients can collect and assess their family health history prior to visiting with their provider. Earlier identification of patients at risk of hereditary cancer leads to earlier and more effective preventive actions for managing hereditary cancer risk.

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Evaluation and comparison of hereditary Cancer guidelines in the population

Hereditary Cancer in Clinical Practice ◽

10.1186/s13053-021-00188-9 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Jordon B. Ritchie ◽

Cecelia Bellcross ◽

Caitlin G. Allen ◽

Lewis Frey ◽

Heath Morrison ◽

...

Keyword(s):

At Risk ◽

Web Services ◽

Gene Mutation ◽

Hereditary Cancer ◽

Gene Mutations ◽

Family Health ◽

Cancer History ◽

Li Fraumeni Syndrome ◽

Patients At Risk ◽

Genetic Consultation

Abstract Background Family health history (FHx) is an effective tool for identifying patients at risk of hereditary cancer. Hereditary cancer clinical practice guidelines (CPG) contain criteria used to evaluate FHx and to make recommendations for genetic consultation. Comparing different CPGs used to evaluate a common set of FHx provides insight into how well the CPGs perform, the extent of agreement across guidelines, and how well they identify patients who should consider a cancer genetic consultation. Methods We compare the American College of Medical Genetics and Genomics (ACMG) and the National Comprehensive Cancer Networks (NCCN) (2019) CPG criteria for FHx collected by a chatbot and evaluated by ontologies and web services in a previous study. Collected FHx met criteria from seven groups: Gene Mutation, Breast and Ovarian, Li-Fraumeni syndrome (LFS), Colorectal and Endometrial, Relative Meets Criteria, ACMG Only Criteria, and NCCN Testing. CPG Criteria were coded and matched across 12 ACMG sub-guidelines and 6 NCCN sub-guidelines for comparison purposes. Results The dataset contains 4915 records, of which 2221 met either ACMG or NCCN criteria and 2694 did not. There was significant overlap—1179 probands met both ACMG and NCCN criteria. The greatest similarities were for Gene Mutation and Breast and Ovarian criteria and the greatest disparity existed among Colorectal and Endometrial criteria. Only 156 positive gene mutations were reported and of the 2694 probands who did not meet criteria, 90.6% of them reported at least one cancer in their personal or family cancer history. Conclusion Hereditary cancer CPGs are useful for identifying patients at risk of developing cancer based on FHx. This comparison shows that with the aid of chatbots, ontologies, and web services, CPGs can be more efficiently applied to identify patients at risk of hereditary cancer. Additionally this comparison examines similarities and differences between ACMG and NCCN and shows the importance of using both guidelines when evaluating hereditary cancer risk.

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The power of community-based health communication interventions to promote cancer prevention and control for at-risk populations

Patient Education and Counseling ◽

10.1016/j.pec.2008.03.015 ◽

2008 ◽

Vol 71 (3) ◽

pp. 315-318 ◽

Cited By ~ 10

Author(s):

Gary Kreps ◽

Linda Neuhauser ◽

Lisa Sparks ◽

Melinda M. Villagran

Keyword(s):

At Risk ◽

Health Communication ◽

Cancer Prevention ◽

Prevention And Control ◽

Community Based ◽

Cancer Prevention And Control ◽

At Risk Populations ◽

Communication Interventions ◽

And Control

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Health Information and Health Communication Technology: Impacts and Implications

SSRN Electronic Journal ◽

10.2139/ssrn.3686187 ◽

2020 ◽

Author(s):

Babatunde Olofin

Keyword(s):

Health Communication ◽

Health Information ◽

Communication Technology ◽

Health Communication Technology

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A surveillance clinic for children and adolescents with, or at risk of, hereditary cancer predisposition syndromes

The Medical Journal of Australia ◽

10.5694/mja2.51002 ◽

2021 ◽

Vol 214 (7) ◽

pp. 335

Author(s):

Nicholas Leedman ◽

Murray Princehorn ◽

Nicholas Gottardo ◽

Claire Franklin ◽

Rebecca D'Souza ◽

...

Keyword(s):

At Risk ◽

Children And Adolescents ◽

Hereditary Cancer ◽

Cancer Predisposition ◽

Hereditary Cancer Predisposition

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Can health information through mobile phones close the divide in health behaviours among the marginalised? An equity analysis of Kilkari in Madhya Pradesh, India

BMJ Global Health ◽

10.1136/bmjgh-2021-005512 ◽

2021 ◽

Vol 6 (Suppl 5) ◽

pp. e005512

Author(s):

Diwakar Mohan ◽

Kerry Scott ◽

Neha Shah ◽

Jean Juste Harrisson Bashingwa ◽

Arpita Chakraborty ◽

...

Keyword(s):

Health Information ◽

Post Partum ◽

Controlled Trial ◽

Family Health ◽

Health Behaviours ◽

Madhya Pradesh ◽

Alternative Communication ◽

Expectant Mothers ◽

Randomised Controlled ◽

Caste Groups

Kilkari is one of the largest maternal mobile messaging programmes in the world. It makes weekly prerecorded calls to new and expectant mothers and their families from the fourth month of pregnancy until 1-year post partum. The programme delivers reproductive, maternal, neonatal and child health information directly to subscribers’ phones. However, little is known about the reach of Kilkari among different subgroups in the population, or the differentiated benefits of the programme among these subgroups. In this analysis, we assess differentials in eligibility, enrolment, reach, exposure and impact across well-known proxies of socioeconomic position—that is, education, caste and wealth. Data are drawn from a randomised controlled trial (RCT) in Madhya Pradesh, India, including call data records from Kilkari subscribers in the RCT intervention arm, and the National Family Health Survey-4, 2015. The analysis identifies that disparities in household phone ownership and women’s access to phones create inequities in the population eligible to receive Kilkari, and that among enrolled Kilkari subscribers, marginalised caste groups and those without education are under-represented. An analysis of who is left behind by such interventions and how to reach those groups through alternative communication channels and platforms should be undertaken at the intervention design phase to set reasonable expectations of impact. Results suggest that exposure to Kilkari has improved levels of some health behaviours across marginalised groups but has not completely closed pre-existing gaps in indicators such as wealth and education.

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HIPAA Hoopla: Privacy and Security of Identifiable Health Information

The Journal of School Nursing ◽

10.1177/10598405010170060901 ◽

2001 ◽

Vol 17 (6) ◽

pp. 336-341 ◽

Cited By ~ 2

Author(s):

Martha Dewey Bergren

Keyword(s):

School Districts ◽

Health Information ◽

Family Health ◽

School Nurses ◽

Information Resources ◽

Student Health ◽

Privacy And Security ◽

Privacy Act ◽

The Family ◽

Health Information Resources

The privacy and security provisions of the Health Insurance Portability and Accountability Act (HIPAA) are changing the standards for how identifiable health information is handled. This article explains HIPAA and how it interacts with the Family Educational Right to Privacy Act. The advent of HIPAA and the attention given to privacy and security of identifiable health information provides the opportunity for school nurses, school districts, and administrators to revisit and update how they handle student health information. Resources to assist in establishing policies, procedures, and practices that protect student and family health information are identified.

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Framing in Health Communication: Identifying the Factors That Influence the Re-posting of Social Media Messages during COVID-19 Outbreaks in China (Preprint)

10.2196/preprints.30255 ◽

2021 ◽

Author(s):

Jingzhong Xie ◽

Jun Lai ◽

Dongying Zhang

Keyword(s):

Social Media ◽

Health Communication ◽

Health Information ◽

Information Needs ◽

Information Sources ◽

Negative Binomial ◽

Public Awareness ◽

Public Health Agencies ◽

Media Messages ◽

Action Frame

BACKGROUND Social media has become an important tool to implement risk communication in COVID-19 pandemic, and made health information can gain more exposure by re-posting. OBJECTIVE This paper attempts to identify the factors associated with re-posting of social media messages about health information METHODS Content analysis was applied to scrutinize 4396 Weibo posts that were posted by national and provincial public health agencies Weibo accounts and identified features of information sources and information features, and adopted Zero-Inflated Negative Binomial (ZINB) model to analyze the association between these features and the frequency of message being re-posted. RESULTS Results showed that the followers and the governmental level of information sources are correlated with increased message reposting. The information features, such as hashtags#, picture, video, emotional(!), and the usage of severity, reassurance, efficacy and action frame were associated with increased message reposting behaviors, while hyperlink and usage of uncertainty frame correlated with reduced message reposting behaviors. CONCLUSIONS The features of health information sources, structures , style and content should be paid close attention by health organizations and medical professionals to satisfy the public’s information needs and preferences, promote the public's health engagement. Suitable information systems designing, and health communication strategies making during different stages of the pandemic may improve public awareness of the COVID-19, alleviate negative emotions, promote preventive measures to curb the spread of the virus.

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