Cohort profile: HealthWise Wales. A research register and population health data platform with linkage to National Health Service data sets in Wales

Abstract

PurposeRecruitment and follow-up in epidemiological studies are time-consuming and expensive. Combining online data collection with a register of individuals who agree to be contacted about research opportunities provides an efficient, cost-effective platform for population-based research. HealthWise Wales (HWW) aims to facilitate research by recruiting a cohort of individuals who have consented to be informed about research projects, advertising studies to participants, supporting data collection on specific topics and providing access to linked healthcare data for secondary analyses. In this paper, we describe the design of the project, ongoing data collection, methods of data linkage to routine healthcare records, baseline characteristics of participants, the strengths and limitations of the register, and the ways in which the project can support researchers.ParticipantsAdults (aged 16 years and above) living or receiving their healthcare in Wales are eligible for inclusion. Participants consent to be contacted for follow-up data collection and for their details to be used to access their routinely collected National Health Service records for research purposes. Data are collected using a web-based application, with new questionnaires added every 6 months. Data collection on sociodemographic and lifestyle factors is repeated at intervals of 2–3 years. Recruitment is ongoing, with 21 779 participants alive and currently registered.Findings to date99% of participants have complete information on age and sex, and 64% have completed questionnaires on sociodemographic and lifestyle factors. These data can be linked with national health databases within the Secure Anonymised Information Linkage (SAIL) databank, with 93% of participants matching a record in SAIL. HWW has facilitated the recruitment of 43 826 participants to 15 different studies.Future plansThe medium-term goal for the project is to enrol at least 50 000 adults. Recruitment strategies are being devised to achieve a study sample that closely models the population of Wales. Potential biosampling methods are also currently being explored.

Dementias Platform UK Clinical Studies and Great Minds Register: protocol of a targeted brain health studies recontact database

“…Recruitment to GM began in January 2018 through the Airwave 10 and HealthWise Wales 11 cohorts. Membership as of 11th of May 2020 stands at 3055 with 1650 having completed the cognitive battery.…”

Public Attitudes towards Medicinal Waste and Medicines Reuse in a ‘Free Prescription’ Healthcare System

“…The questionnaire was hosted on the HealthWise Wales’ platform which is the survey’s virtual online interface comprising the HealthWise Wales Website and Web Application (data collection tool) [ 20 ]. People over the age of sixteen years of age living in Wales or using health services in Wales have been eligible to register with the HealthWise Wales platform since it was launched in 2016.…”

Alternative approaches to managing respiratory tract infections: a survey of public perceptions

“…We administered a questionnaire as part of a national online cohort study in Wales, called HealthWise Wales (HWW). (22) All adults (age 16 years or older) who are usually resident or receive their healthcare in Wales were eligible for inclusion in HWW. Participants were recruited through television, radio and social media advertising campaigns, as well as promotion through the NHS (hospitals and GP surgeries), pharmacies, large employers, and at cultural events.…”