HealthWise Wales (HWW) has used and operated a SeRP tenancy since it began in 2015. The project aims to build a rich cohort of self-reported, longitudinal health and lifestyle data for the population of Wales, UK. Facilitated by SeRP, the storage, linkage and anonymised use of these data allow for robust research and intelligence-driven health and policy interventions.
“By collaborating with SeRP, HealthWise Wales has been able to build a unique resource which record-links survey data on behaviour and opinions with primary and secondary healthcare datasets. This provides a data rich environment for health and policy research to improve health and healthcare in Wales and beyond. SeRP has supported HealthWise Wales in developing a secure data access portal, SAPPHIRe, which allows approved researchers to analyse the required data, securely.”
Dr Sunil Dolwani, HealthWise Wales Principal Investigator.
What is HealthWise Wales?
Initially funded for the period 2015-2020, HWW set about recruiting 50,000 voluntary members of the public to provide health and lifestyle information by questionnaire. With now over 40,000 participants recruited, the project’s duration has been extended owing to the valuable contribution being made to health research, both within Wales and beyond.
HWW was established through Health and Care Research Wales, a Welsh government supported body set-up to oversee a networked and collaborative approach to health and social care research and practice in Wales.
HWW hopes to involve everyone in Wales in improving the health and wellbeing of the population. It is hoped that large scale public involvement and contribution will help to work out the most important questions on health, wellbeing and social care that researchers should be asking.
Participation in HWW is open to anyone over the age of 16 who resides in or receives healthcare in Wales, regardless of whether they are healthy or unwell. Volunteers are asked every 6 months to complete health and lifestyle questionnaires and agree to be contacted about other research initiatives for which they may qualify based on the information they’ve provided.
How is HealthWise Wales integrated with SeRP?
To date, HWW has captured the health, wellbeing and lifestyle data from over 40,000 participants whose demographic data is highly representative of the national population, making this cohort a rich resource for research. This data is held securely within SeRP’s ISO-accredited data environment. Having achieved ISO27001 certification, SeRP operates an internationally recognised best-practice standard for an Information Security Management System (ISMS).
In addition to the core questionnaires, HWW hosts researcher-led surveys, both of which can be linked to the participants’ routinely collected healthcare data. SeRP provides HWW with a reliable, accurate, intelligent, and award-winning, data linkage capability that uses both probabilistic and deterministic methods. The linked data are stored on HWW’s Secure Analysis Portal and Protected HealthWise Wales Information Repository (SAPPHIRe), which is implemented via SeRP.
All data are accessed and analysed using SAPPHIRe which benefits from SeRP’s customisable suite of analytical tools enabling users to analyse data using the querying software that is most familiar to them. SeRP’s Trusted Research Environment equips HWW with a flexible governance approach to data access that provides a shared, collaborative space, but with strict access controls tailored to SAPPHIRe and HWW’s requirements.
“SeRP enables HWW to maximise the potential of its consent to contact register of research ready participants. Not only can data collected within the HWW platform be matched to healthcare data, but with appropriate governance and participant consent, data collected outside the HWW platform can also be linked to existing data within SAPPHIRe. This facilitates responsive and rapid research to be undertaken such as was required during the COVID-19 pandemic.”
Dr. Pauline Ashfield-Watt, HealthWise Wales Research Manager
What impact is HealthWise Wales having?
The HWW study has recruited thousands of volunteers into dozens of research projects which it hopes will lead to a greater understanding of population-scale health and support the NHS to deliver improved health care. The HWW platform and the data sets generated by its generous and engaged cohort of public volunteers have also supported and enabled a range of important areas of work and research, including,
Dementia Platform UK - Clinical Studies and Great Minds Register: protocol of a targeted brain health studies recontact database. HealthWise Wales publications
Koychev I, Young S, Holve H, Ben Yehuda M, Gallacher J. (BMJ Open, November 2020 10(11))
The link between poor mental health and the weight of responsibility borne by caregivers examined by Tseliou et al (2019) - highlighting a need for greater support for carers.HealthWise Wales publications
Tseliou, F., Heslop, L., Bonner-Evans, C., Richardson, A., Paranjothy, S., & Ashfield-Watt, P. (2019). Mental health of carers in Wales: a national population survey. The Lancet, 394, S92.
Prevalence of hidradenitis suppurativa is one percent of the population of Wales using the Secure Anonymised Information Linkage (SAIL) Databank. HealthWise Wales publications
Ingram, J., Collins, H., Atkinson, M. and Brooks, C. (British Journal of Dermatology, May 2020)
“The HealthWise Wales participants have provided personal data to inform research altruistically. There are a number of research projects that HWW participants have taken part in that are now analysing data within the SAPPHIRe portal, such as mental and cognitive health and relationships between health attitudes, behaviours and health outcomes associated with the COVID-19 pandemic that will lead to impactful research outcomes. HealthWise Wales has engaged people in Wales with research, and to support researchers to reach an active and engaged cohort with a high response rate. Working with collaborative partners, such as SeRP and DPUK and other research groups we will continue to support important research throughout Wales.”
Dr Sunil Dolwani, HealthWise Wales Director