Linkage Consent Research Articles

Investigating the Determinants that Influence Consent Behavior for Linking Survey Data with Administrative Records

This research investigates the determinants of consent behavior in linking survey and administrative data, filling a notable gap in existing studies. It conducts a thorough systematic review of a wide variety of surveys from multiple countries, examining survey and consent design characteristics to assess their influence on consent rates. Through statistical analysis, the study evaluates numerous factors such as survey response rate, topic, country, year, type, mode, age of target population, sponsor, and various aspects related to the consent request process. The findings suggest that higher consent rates are more likely in computer assisted telephone interview (CATI) compared to self-administered surveys, in surveys sponsored by governments, in panel surveys as opposed to cross-sectional ones, and where explicit consent is sought, especially when the consent request is made at the start of the survey. This research makes a significant contribution to academic literature by empirically demonstrating the effect of various survey and consent design features on consent behavior, providing essential insights for crafting surveys to maximize consent rates for data linkage. It closes an important research gap in survey methodology and the behavior on data linkage consent, offering a unique, extensive analysis across a broad range of international surveys.

Examining the quality and population representativeness of linked survey and administrative data: guidance and illustration using linked 1958 National Child Development Study and Hospital Episode Statistics data.

Recent years have seen an increase in linkages between survey and administrative data. It is important to evaluate the quality of such data linkages to discern the likely reliability of ensuing research. Evaluation of linkage quality and bias can be conducted using different approaches, but many of these are not possible when there is a separation of processes for linkage and analysis to help preserve privacy, as is typically the case in the UK (and elsewhere). We aimed to describe a suite of generalisable methods to evaluate linkage quality and population representativeness of linked survey and administrative data which remain tractable when users of the linked data are not party to the linkage process itself. We emphasise issues particular to longitudinal survey data throughout. Our proposed approaches cover several areas: i) Linkage rates, ii) Selection into response, linkage consent and successful linkage, iii) Linkage quality, and iv) Linked data population representativeness. We illustrate these methods using a recent linkage between the 1958 National Child Development Study (NCDS; a cohort following an initial 17,415 people born in Great Britain in a single week of 1958) and Hospital Episode Statistics (HES) databases (containing important information regarding admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England). Our illustrative analyses suggest that the linkage quality of the NCDS-HES data is high and that the linked sample maintains an excellent level of population representativeness with respect to the single dimension we assessed. Through this work we hope to encourage providers and users of linked data resources to undertake and publish thorough evaluations. We further hope that providing illustrative analyses using linked NCDS-HES data will improve the quality and transparency of research using this particular linked data resource.

Linking survey with Twitter data: examining associations among smartphone usage, privacy concern and Twitter linkage consent

ABSTRACT Linking survey and social media data has gained popularity. However, obtaining consent from respondents to link social media is a known challenge. Using data from a nationally representative survey of the U.K. this study investigated whether respondents’ a) activity frequency, b) activity variety and c) technical skills with smartphones are associated with consent to link Twitter data to survey responses. Additionally, this study explored mediating role of privacy and security concern and moderating effects of age, gender, employment and educational level to better understand the influences of privacy concern on Twitter linkage consent. Results showed that activity variety with smartphones is positively associated with Twitter linkage consent, and privacy concern mediated the effects of activity frequency and activity variety with smartphones on linkage consent. Age and employment status moderated the associations between privacy concern and linkage consent, with younger and employed respondents being more likely to be affected by privacy concern.

Mortality Estimates and Excess Mortality in Rheumatoid Arthritis.

To determine long-term (20 year) survival in RA patients enrolled in the Australian Rheumatology Association Database (ARAD). ARAD patients with RA and data linkage consent who were diagnosed from 1995 onwards were included. Death data were obtained through linkage to the Australian National Death Index. Results were compared with age, gender and calendar year matched Australian population mortality rates.Analysis included both the standardised mortality ratio (SMR) and relative survival models. Restricted mean survival time (RMST) at 20 years was calculated as a measure of life lost. Cause-specific SMRs (CS-SMRs) were estimated for ICD-10 chapter cause of death classifications. 1895 RA patients were included, 74% female, baseline median age 50 years (IQR 41-58), with 204 deaths. There was no increase in mortality over the first 10 years of follow up, but at 20 years the SMR was 1.49 (95%CI 1.30,1.71) and the relative survival was 94% (95% CI 91,97). The difference between observed (18.41 years) and expected (18.68 years) RMST was 4 months.Respiratory conditions were an important underlying cause of death in RA, primarily attributable to pneumonia (CS-SMR 5.2, 95% CI 2.3, 10.3) and interstitial lung disease (CS-SMR 7.6, 95% CI 3.0, 14.7), however coronary heart disease (CS-SMR 0.82, 95% CI 0.42, 1.4) and neoplasms (CS-SMR 1.2 (0.89, 1.5) were not. Mortality risk in this RA cohort accrues over time and is moderately increased at 20 years follow-up. Respiratory diseases may have supplanted cardiovascular diseases as a major contributor to this mortality gap.

Effects of Prepaid Postage Stamps and Postcard Incentives in a Web Survey Experiment

Even small monetary incentives, e.g., a one-dollar bill in a postal invitation letter, can increase the response rate in a web survey. However, in the euro currency area, the smallest amount of monetary incentive for a postal invitation is a five-euro bill, which is costly. As such, we conducted a random experiment with prepaid stamp and postcard incentives as affordable alternatives. We compare the effect of our experimental groups with a control group in terms of response rates, response rates in a subsequent wave, data linkage consent, and data collection costs. Compared with the control group, the postcard incentive has no effect on our outcomes except overall costs. Using a prepaid stamp incentive increases the response rate overall but with different effect sizes for subgroups. We find no effect of stamp incentives on response rates in a subsequent wave or data linkage consent.

Reducing Nonresponse and Data Linkage Consent Bias in Large-Scale Panel Surveys.

Selection bias is an ongoing concern in large-scale panel surveys where the cumulative effects of unit nonresponse increase at each subsequent wave ofdata collection. A second source of selection bias in panel studies is the inability to link respondents to supplementary administrative records, either because respondents do not consent to link or the matching algorithm fails to locate their administrative records. Both sources of selection bias can affect the validity of conclusions drawn from these data sources. In this article, I discuss recently proposed methods of reducing both sources of selection bias in panel studies, with a special emphasis on reducing selection bias in the US Health and Retirement Study.

Consent to Data Linkage in LSAC

IntroductionLinking the existing longitudinal data assets with administrative datasets provide the opportunity to transform longitudinal data into valuable assets to inform research and policy development.
 Objectives and ApproachThis paper will focus on Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) data linkage landscape and consents which are invaluable for the development of evidence-based health-social-economic policies.
 ResultsLSAC is Australia’s first nationally-representative longitudinal study of child development. Since 2004, two cohorts of 5,000 children and their parents have been interviewed every two years (B (baby) cohort and K (kindergarten) cohort). Over the years, multiple data linkage has been undertaken based on either parental consent or study child consent.
 In 2004 parents were asked to consent on behalf of the study child to link Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS)/Repatriation Pharmaceutical Benefits Scheme (RPBS) and Australian Childhood Immunisation Register (ACIR) administrative data to LSAC. The consent rate was 93% was for MBS, PBS and ACIR. Nearly 90% of B cohort parents provided consent to link Australian Early Development Census (AEDC)/National
 Assessment Program – Literacy and Numeracy (NAPLAN) and 95.4% of K cohort parents provided consent to link NAPLAN.Then ten years later, children in the K cohort were asked to consent to MBS/PBS and income-support administrative data. The rates were 86.6% for MBS, 85.4% for PBS and 81.2% for income-support administrative data. Parental consent to link their MBS, PBS and income-support administrative data was also sought and these rates varied between 60% to 88%.
 Conclusion/ImplicationsThe discussion will focus on differences in consent rates by time of consent, consenting individual and type of administrative data to be linked. Challenges and considerations that researches should be aware of when designing the linkage consent methodology will also be discussed.

Does Benefit Framing Improve Record Linkage Consent Rates? A Survey Experiment.

Survey researchers are increasingly seeking opportunities to link interview data with administrative records. However, obtaining consent from all survey respondents (or certain subgroups) remains a barrier to performing record linkage in many studies. We experimentally investigated whether emphasizing different benefits of record linkage to respondents in a telephone survey of employee working conditions improves respondents' willingness to consent to linkage of employment administrative records relative to a neutral consent request. We found that emphasizing linkage benefits related to "time savings" yielded a small, albeit statistically significant, improvement in the overall linkage consent rate (86.0) relative to the neutral consent request (83.8 percent). The time savings argument was particularly effective among "busy" respondents. A second benefit argument related to "improved study value" did not yield a statistically significant improvement in the linkage consent rate (84.4 percent) relative to the neutral request. This benefit argument was also ineffective among the subgroup of respondents considered to be most likely to have a self-interest in the study outcomes. The article concludes with a brief discussion of the practical implications of these findings and offers suggestions for possible research extensions.

The potential of linking cohort participants to official criminal records: a pilot study using the Avon Longitudinal Study of Parents and Children (ALSPAC)

BackgroundPolicing in the UK is increasingly taking a public health approach to tackling crime. Birth cohort studies are potentially well-placed to provide evidence on the most important risk and preventative factors. Linking official police records to cohort data offers considerable potential for future research, but data privacy concerns mean achieving such linkage is challenging. As a pilot, the Ministry of Justice provided ALSPAC with an anonymous extract (cannot be linked to study data) detailing consenting participants’ criminal convictions and cautions held within the Police National Computer (PNC).
 Main AimTo use anonymised PNC data to inform the potential for future research using ALSPAC and individual-level linked crime data.
 MethodsWe examine criminality (type, when and where committed) in the cohort participants who were sent for linkage to the PNC in 2013 when they were aged approximately 21 years (n=7358). We consider the representativeness of these participants by comparing their self-reported crime-related behaviours during adolescence to those of participants who did not consent to linkage (n=7604). Finally, we consider these self-reported measures by present-day crime linkage consent status.
 ResultsOf those sent for PNC linkage, 885 were linked to a criminal record(s) comprising 2635 convictions and 1365 cautions. A third related to serious crimes, and >90% were committed in Avon and Somerset constabulary. Those sent for linkage self-reported fewer criminal behaviours than those not sent for linkage. Regarding present-day consent status, those who have explicitly opted-in generally self-report fewer criminal behaviours and have less missing data than those who have not responded to the consent campaign.
 ConclusionIf future linkage to individual police records was only achieved for explicit consenters, this would under-estimate criminality in the cohort. The geographical clustering of the crimes means local police records, which are more detailed than those of the PNC, could also be used.

The Effect of Framing and Placement on Linkage Consent.

Numerous surveys link interview data to administrative records, conditional on respondent consent, in order to explore new and innovative research questions. Optimizing the linkage consent rate is a critical step toward realizing the scientific advantages of record linkage and minimizing the risk of linkage consent bias. Linkage consent rates have been shown to be particularly sensitive to certain design features, such as where the consent question is placed in the questionnaire and how the question is framed. However, the interaction of these design features and their relative contributions to the linkage consent rate have never been jointly studied, raising the practical question of which design feature (or combination of features) should be prioritized from a consent rate perspective. We address this knowledge gap by reporting the results of a placement and framing experiment embedded within separate telephone and Web surveys. We find a significant interaction between placement and framing of the linkage consent question on the consent rate. The effect of placement was larger than the effect of framing in both surveys, and the effect of framing was only evident in the Web survey when the consent question was placed at the end of the questionnaire. Both design features had negligible impact on linkage consent bias for a series of administrative variables available for consenters and non-consenters. We conclude this research note with guidance on the optimal administration of the linkage consent question.

A Regional Collaboration of Health (ARCH): Using health survey and linked routine data to understand wellbeing

IntroductionMonitoring social wellbeing and its relationship to health service utilisation by means of appropriate measurement tools can potentially provide a complementary view for influencing service development. Aspects of wellbeing have been collected in the Welsh Health Survey (WHS) while routine health data captures health service utilisation.
 Objectives and ApproachWHS was used to link self-reported wellbeing to health outcomes, prior to linking to routinely collected data. Initially, a measure for personal wellbeing was developed using the four personal wellbeing questions defined by The Office of National Statistics (ONS), included in national surveys from 2011 onward. We conducted regression analysis to identify potential predictors of personal wellbeing scores our model included self-reported lifestyle behaviour, self-reported health, education, work, household and general demographics. Links to primary care, hospital and emergency department datasets are being developed to provide insight into the relationship between wellbeing, multi-morbidity and health service utilisation.
 ResultsFour wellbeing questions had similar scoring patterns across age groups which is different to most health indicators that tend to show a marked health decline with increasing age. There is a difference between mean wellbeing score for males and females. Our finding showed that self-reported of ‘excellent’ or ‘very good’ general health has the largest positive effect on wellbeing while positive viewpoint on self-health has the second largest effect on our model. In addition, being retired from a paid job, eating at least one or 5+ portion of fruit and vegetables and giving up smoking have positive impact on population wellbeing. In contrast, not being able to work, intermediate household occupancy, consuming alcohol in last 12-months, having long-standing illness, showed a negative impact on wellbeing.
 Conclusion/ImplicationsThis project established robust methodology on utilizing survey and routine health data for monitoring and evaluation purposes. We also evaluated the linkability of survey data The latest release of National Survey for Wales (NSW) will cover a combination of self-reported health measures and aims for a higher linkage consent rate.

Agreement of Self-Reported and Administrative Data on Employment Histories in a German Cohort Study: A Sequence Analysis

Collecting life course data is increasingly common in social and epidemiological research, either through record linkage of administrative data or by collecting retrospective interview data. This paper uses data on employment histories collected through both strategies, compares the attained samples, and investigates levels of agreements of individual histories. We use data from the German Heinz Nixdorf Recall Study with information on employment histories collected retrospectively from 2011 until 2014 (N = 3059). Administrative data from the German Institute for Employment Research (IAB) were linked to the survey data. After comparing respondents who provide self-reported histories with the subsample of the ones for which administrative data were available, we investigate the agreement of individual employment histories from the two sources (between 1975 and 2010) using sequence analyses. Almost all participants provided survey data on employment histories (97% of the sample), linkage consent was given by 93%, and administrative data were available for 63% of the participants. People with survey data were more likely to be female, to have a higher education, and to work self-employed and in the tertiary sector. The agreement of individual employment histories is high and similar across time, with a median level of agreement of 89%. Slightly lower values exist for women and people working in the tertiary sector, both having more complex histories. No differences exist for health-related factors. In conclusion, it is likely that missing consent and failed record linkage lead to sample differences; yet, both strategies provide comparable and reliable life course data.

Exploring the Effects of Interviewer- and Self-Administered Survey Modes on Record Linkage Consent Rates and Bias

In an effort to reduce data collection costs survey organizations are considering more cost-effective means of data collection. Such means include greater use of self-administered interview modes and acquiring substantive information from external administrative records conditional on respondent consent. Yet little is known regarding the implications of requesting linkage consent in self-administered (as compared to interviewer-administered) surveys with respect to consent rates and consent bias. To address this knowledge gap we report the results of a linkage consent study in which sampled employees were randomly assigned to an interviewer-administered (face-to-face) or self-administered (mail or Web) interview in which consent to link federal employment records was requested. We observed a strikingly lower consent rate in the self-administered (53.9 percent) versus the interviewer-administered (93.9 percent) survey mode. However, the impact of mode on consent bias was much less severe as survey-measured correlates of linkage consent did not interact with interview mode. Moreover, while self-administration yielded larger consent biases in the linked administrative variables, on average, compared to interviewer-administration, the average relative magnitude of these biases tended to be small (less than 6 percentage points). We conclude by discussing these findings in the context of survey practice and speculating on their possible causes.

Obtaining Record Linkage Consent from Establishments: The Impact of Question Placement on Consent Rates and Bias

Obtaining Record Linkage Consent from Establishments: The Impact of Question Placement on Consent Rates and Bias

Does Granting Linkage Consent in the Beginning of the Questionnaire Affect Data Quality?

Combining survey data with administrative data can make both sources more valuable to researchers, but often respondent consent is needed before such linkage can be done. Asking the linkage consent question at the beginning of the questionnaire yields higher consent rates than asking at the end. However, placing this question at the beginning of the survey may impact respondents’ response behavior throughout the rest of the survey. In this study, we use techniques of causal analysis to investigate the effects of granting consent at the beginning of the survey on later response behavior. We find that responses to three of the four tested variables are not affected, but one variable did show increased measurement error.

Business datasets and record linkage: Correlates of linkage and estimating risks of non-linkage biases.

ABSTRACT
 ObjectivesOur first objective is to investigate how between subject differences in the likelihood of record linkage consent and record linkability determine the composition of and so risks of biases in estimates from linkable business datasets. The utility of datasets linking information from multiple sources is compromised by such non-linkage biases, but both components of the linkage process have rarely been considered. Our second objective is to introduce methods for evaluating non-linkage bias risks in datasets. Such evaluations can inform linkage method choice and assessment of the validity of linked dataset findings. Previous work, often lacking non-linked subject information on non-sample dataset covariates, tends to utilise overall linkage rates as quality measures, but in the related area of survey non-response correlations between analogous response rates and non-response biases are weak.
 Approach We utilise the UK 2010 Small Business Survey (SBS) dataset. If a survey subject consents to record linkage, an attempt is made to append their Inter-Departmental Business Register (IDBR) identifier (if one exists), enabling linkage to other surveys etc. Given this, we evaluate bias risks arising from variation in subject linkage consent and identifier appendability, as well as its product, overall linkability, utilising representativeness indicators developed to evaluate survey non-response bias risks. These measure risks in terms of sample-subset similarity (representativeness) given an attribute covariate set obtained from the sample dataset, based on variation in subject inclusion propensities estimated by logistic regression, and are decomposable to assess correlates of inclusion propensity variation. Specifically, we use the CV (the standard deviation of inclusion propensities divided their mean), computed given nine attribute covariates describing business demography and perceived performance.
 ResultsWe give full details in our presentation. Briefly, overall CVs suggest the linkable dataset exhibits substantial non-representativeness and non-linkage bias risk. Decompositions suggest main impacts on the linkable dataset are under-representation of very small businesses (those with low turnovers, few employees and / or un-incorporated), due to being both less likely to consent and less likely to have an identifier appended, and under-representation of businesses unable / refusing to respond to survey items, due to being less likely to consent.
 Conclusions Our analyses provide evidence of non-linkage bias risks in linked SBS datasets caused by under-representation of several sample subgroups. Each is explicable given known IDBR under-coverage or knowledge of business response processes. We also conclude that representativeness indicators are an easily applied method by which such risks can be evaluated.

An Investigation of Record Linkage Refusal and Its Implications for Empirical Research

Linking survey data to administrative records provides access to large quantities of information such as full employment biographies. Although this practice is becoming increasingly common, only a small number of studies in the field of social sciences have thus far investigated the variables associated with linkage consent. These studies have produced diverging results with regard to the relevance of certain characteristics for the provision or non-provision of linkage consent. In this study, we analyze two comparable German datasets, thereby shedding new light on the possible reasons for previously inconsistent results. This is also the first study in which possible linkage consent bias is investigated in applied models, via the replication of an existing study for the sample in which respondents did not consent to data linkage. Whilst similar results are found between standard sociodemographic variables and linkage consent, there are considerable inconsistencies between the comparable datasets in terms of variables such as individual personality traits and work satisfaction. Overall, however, the results are promising – results do not differ much where respondents who did not provide linkage consent are considered.

The relationship between linkage refusal and selected health conditions of survey respondents.

To maximize limited resources and reduce respondent burden, there is an increased interest in linking population health surveys with other sources of data, such as administrative records. Health differences between adults who consent to and refuse linkage could bias study results with linked data. National Health Interview Survey (NHIS) data are routinely linked to administrative records from the Social Security Administration and the Centers for Medicare and Medicaid Services. Using the NHIS 2010-2013, we examined the association between selected health conditions and respondents' linkage refusal. Linkage refusal was significantly lower for adults with serious psychological distress, chronic obstructive pulmonary disease, diabetes, heart disease, stroke, hypertension, and cancer compared to those without these conditions. Linkage refusal decreased as the number of conditions increased and health status decreased. Our finding that linkage consent was associated with respondents' health characteristics suggests that researchers should try to address potential linkage bias in their analyses.

Placement, Wording, and Interviewers: Identifying Correlates of Consent to Link Survey and Administrative Data

Record linkage is becoming more important as survey budgets are tightening while at the same time demands for more statistical information are rising. Not all respondents consent to linking their survey answers to administrative records, threatening inferences made from linked data sets. So far, several studies have identified respondent-level attributes that are correlated with the likelihood of providing consent (e.g., age, education), but these factors are outside the control of the survey designer. In the present study three factors that are under the control of the survey designer are evaluated to assess whether they impact respondents' likelihood of linkage consent: 1) the wording of the consent question; 2) the placement of the consent question and; 3) interviewer attributes (e.g., attitudes toward data sharing and consent, experience, expectations). Data from an experiment were used to assess the impact of the first two and data from an interviewer survey that was administered prior to the start of data collection are used to examine the third. The results show that in a telephone setting: 1) indicating time savings in the wording of the consent question had no effect on the consent rate; 2) placement of the consent question at the beginning of the questionnaire achieved a higher consent rate than at the end and; 3) interviewers' who themselves would be willing to consent to data linkage requests were more likely to obtain linkage consent from respondents.

An Evaluation of Panel Nonresponse and Linkage Consent Bias in a Survey of Employees in Germany

An Evaluation of Panel Nonresponse and Linkage Consent Bias in a Survey of Employees in Germany