Privacy Preserving Probabilistic Record Linkage (P3RL): a novel method for linking existing health-related data and maintaining participant confidentiality.

BACKGROUND Record linkage of existing individual health care data is an efficient way to answer important epidemiological research questions. Reuse of individual health-related data faces several problems: Either a unique personal identifier, like social security number, is not available or non-unique person identifiable information, like names, are privacy protected and cannot be accessed. A solution to protect privacy in probabilistic record linkages is to encrypt these sensitive information. Unfortunately, encrypted hash codes of two names differ completely if the plain names differ only by a single character. Therefore, standard encryption methods cannot be applied. To overcome these challenges, we developed the Privacy Preserving Probabilistic Record Linkage (P3RL) method. METHODS In this Privacy Preserving Probabilistic Record Linkage method we apply a three-party protocol, with two sites collecting individual data and an independent trusted linkage center as the third partner. Our method consists of three main steps: pre-processing, encryption and probabilistic record linkage. Data pre-processing and encryption are done at the sites by local personnel. To guarantee similar quality and format of variables and identical encryption procedure at each site, the linkage center generates semi-automated pre-processing and encryption templates. To retrieve information (i.e. data structure) for the creation of templates without ever accessing plain person identifiable information, we introduced a novel method of data masking. Sensitive string variables are encrypted using Bloom filters, which enables calculation of similarity coefficients. For date variables, we developed special encryption procedures to handle the most common date errors. The linkage center performs probabilistic record linkage with encrypted person identifiable information and plain non-sensitive variables. RESULTS In this paper we describe step by step how to link existing health-related data using encryption methods to preserve privacy of persons in the study. CONCLUSION Privacy Preserving Probabilistic Record linkage expands record linkage facilities in settings where a unique identifier is unavailable and/or regulations restrict access to the non-unique person identifiable information needed to link existing health-related data sets. Automated pre-processing and encryption fully protect sensitive information ensuring participant confidentiality. This method is suitable not just for epidemiological research but also for any setting with similar challenges.

Reporting and handling missing outcome data in mental health: a systematic review of Cochrane systematic reviews and meta-analyses

OBJECTIVES The purpose of the study was to provide empirical evidence about the reporting of methodology to address missing outcome data and the acknowledgement of their impact in Cochrane systematic reviews in the mental health field. METHODS Systematic reviews published in the Cochrane Database of Systematic Reviews after January 1, 2009 by three Cochrane Review Groups relating to mental health were included. RESULTS One hundred ninety systematic reviews were considered. Missing outcome data were present in at least one included study in 175 systematic reviews. Of these 175 systematic reviews, 147 (84%) accounted for missing outcome data by considering a relevant primary or secondary outcome (e.g., dropout). Missing outcome data implications were reported only in 61 (35%) systematic reviews and primarily in the discussion section by commenting on the amount of the missing outcome data. One hundred forty eligible meta-analyses with missing data were scrutinized. Seventy-nine (56%) of them had studies with total dropout rate between 10 and 30%. One hundred nine (78%) meta-analyses reported to have performed intention-to-treat analysis by including trials with imputed outcome data. Sensitivity analysis for incomplete outcome data was implemented in less than 20% of the meta-analyses. CONCLUSIONS Reporting of the techniques for handling missing outcome data and their implications in the findings of the systematic reviews are suboptimal.

Trends in health information seeking among cancer and non-cancer adults between 2003 and 2005: A descriptive analysis of Health Information National Trends Survey (HINTS) data

Cancer is the second leading cause of death in the United States. With the advent of new technologies, changes in health care delivery, and multiplicity of provider types that patients must see, cancer care management has become increasingly complex. The availability of cancer health information has been shown to help cancer patients cope with the management and effects of their cancers. As a result, more cancer patients are using the internet to find resources that can aid in decision-making and recovery. ^ The Health Information National Trends Survey (HINTS) is a nationally representative survey designed to collect information about the experiences of cancer and non-cancer adults with health information sources. The HINTS survey focused on both conventional sources as well as newer technologies, particularly the internet. This study is a descriptive analysis of the HINTS 2003 and HINTS 2005 survey data. The purpose of the research is to explore the general trends in health information seeking and use by US adults, and especially by cancer patients. ^ From 2003 to 2005, internet use for various health-related activities appears to have increased among adults with and without cancer. Differences were found between the groups in the general trust in information media, particularly the internet. Non-cancer respondents tended to have greater trust in information media than cancer respondents. ^ The latter portion of this work examined characteristics of HINTS respondents that were thought to be relevant to how much trust individuals placed in the internet as a source of health information. Trust in health information from the internet was significantly greater among younger adults, higher-earning households, internet users, online seekers of health or cancer information, and those who found online cancer information useful. ^

The relationship between risk perception and ethnicity as an explanation for late stage skin cancer diagnosis in Black and Hispanic populations: An analysis using data from the 2005 Health Information and National Trends Survey

Objective. The purpose of this study was to determine the relationship between ethnicity and skin cancer risk perception while controlling for other risk factors: education, gender, age, access to healthcare, family history of skin cancer, fear, and worry. ^ Methods. This study utilized the Health Information National Trends Survey (HINTS) dataset, a nationally representative sample of 5,586 individuals 18 years of age or older. One third of the respondents were chosen at random and asked questions involving skin cancer. Analysis was based on questions that identified skin cancer risk perception, fear of finding skin cancer, and frequency of worry about skin cancer and a variety of sociodemographic factors. ^ Results. Ethnicity had a significant impact on risk perception scores while controlling for other risk factors. Other risk factors that also had a significant impact on risk perception scores included family history of skin cancer, age, and worry. ^

The relationship between obesity, autoimmune disease, and C-reactive protein: A secondary data analysis of the National Health and Nutrition Examination Survey (NHANES) 2009--2010

Autoimmune diseases are a group of inflammatory conditions in which the body's immune system attacks its own cells. There are over 80 diseases classified as autoimmune disorders, affecting up to 23.5 million Americans. Obesity affects 32.3% of the US adult population, and could also be considered an inflammatory condition, as indicated by the presence of chronic low-grade inflammation. C-reactive protein (CRP) is a marker of inflammation, and is associated with both adiposity and autoimmune inflammation. This study sought to determine the cross-sectional association between obesity and autoimmune diseases in a large, nationally representative population derived from NHANES 2009–10 data, and the role CRP might play in this relationship. Overall, the results determined that individuals with autoimmune disease were 2.11 times more likely to report being overweight than individuals without autoimmune disease and that CRP had a mediating affect on the obesity-autoimmune relationship. ^

Prevalence and risk factors of asthma and work -related asthma among U.S. adults: Data from the Third National Health and Nutrition Examination Survey, 1988--1994

This cross-sectional analysis of the data from the Third National Health and Nutrition Examination Survey was conducted to determine the prevalence and determinants of asthma and wheezing among US adults, and to identify the occupations and industries at high risk of developing work-related asthma and work-related wheezing. Separate logistic models were developed for physician-diagnosed asthma (MD asthma), wheezing in the previous 12 months (wheezing), work-related asthma and work-related wheezing. Major risk factors including demographic, socioeconomic, indoor air quality, allergy, and other characteristics were analyzed. The prevalence of lifetime MD asthma was 7.7% and the prevalence of wheezing was 17.2%. Mexican-Americans exhibited the lowest prevalence of MD asthma (4.8%; 95% confidence interval (CI): 4.2, 5.4) when compared to other race-ethnic groups. The prevalence of MD asthma or wheezing did not vary by gender. Multiple logistic regression analysis showed that Mexican-Americans were less likely to develop MD asthma (adjusted odds ratio (ORa) = 0.64, 95%CI: 0.45, 0.90) and wheezing (ORa = 0.55, 95%CI: 0.44, 0.69) when compared to non-Hispanic whites. Low education level, current and past smoking status, pet ownership, lifetime diagnosis of physician-diagnosed hay fever and obesity were all significantly associated with MD asthma and wheezing. No significant effect of indoor air pollutants on asthma and wheezing was observed in this study. The prevalence of work-related asthma was 3.70% (95%CI: 2.88, 4.52) and the prevalence of work-related wheezing was 11.46% (95%CI: 9.87, 13.05). The major occupations identified at risk of developing work-related asthma and wheezing were cleaners; farm and agriculture related occupations; entertainment related occupations; protective service occupations; construction; mechanics and repairers; textile; fabricators and assemblers; other transportation and material moving occupations; freight, stock and material movers; motor vehicle operators; and equipment cleaners. The population attributable risk for work-related asthma and wheeze were 26% and 27% respectively. The major industries identified at risk of work-related asthma and wheeze include entertainment related industry; agriculture, forestry and fishing; construction; electrical machinery; repair services; and lodging places. The population attributable risk for work-related asthma was 36.5% and work-related wheezing was 28.5% for industries. Asthma remains an important public health issue in the US and in the other regions of the world. ^

Use of health system data to study morbidity related to pregnancy Loss

http://www.guttmacher.org/pubs/compilations/IUSSP/IUSSP-Chapter11.pdf

Who has a repeat abortion? Identifying women at risk of repeated terminations of pregnancy : analysis of routinely collected health care data

Peer reviewed

Recovery from Pediatric Brain Injury: A Preliminary Comparison of Longitudinal Data on Psychological Symptomology and Mental Health Treatment

Objective: To document the course of psychological symptomology, mental health treatment, and unmet psychological needs using caregiver reports in the first 18 months following pediatric brain injury (BI). Method: Participants included 28 children (aged 1-18 years) who were hospitalized at a children's hospital's rehabilitation unit. Caregiver reports of children's psychological symptoms, receipt of mental health treatment, and unmet psychological needs were assessed at one month, six months, 12 months, and 18 months post-BI. Results: Caregivers reported a general increase in psychological symptoms and receipt of mental health treatment over the 18 months following BI; however, there was a substantial gap between the high rate of reported symptoms and low rate of reported treatment. Across all four follow-up time points there were substantial unmet psychological needs (at least 60% of sample). Conclusions: Findings suggest that there are substantial unmet psychological needs among children during the first 18 months after BI. Barriers to mental health treatment for this population need to be addressed.