Health Wise Wales (HWW) has a register of 40,000+ participants that are ready to take part in research studies.
HWW aims to recruit at least 50,000 individuals living in Wales between 2015-2020. These participants are also members of a cohort with longitudinal data on health and lifestyle factors and record-linked to routinely available healthcare data in Wales.
There are a number of different ways HWW can support your research data collection:
- HWW can email all participants/targeted participants about your study to promote recruitment.
- Researchers can access data held in the HWW data repository, which can include routine healthcare data that is available in the Secure Anonymised Information Linkage (SAIL) databank;
- HWW can support data collection for your study by hosting questionnaire modules on the HWW Platform and linking participant data to healthcare records (SAIL);
The HWW research Platform was set up to support a broad range of health and social care research. All research needs to fit with the ethos and the following research themes:
- Impact of social inequalities on health and wellbeing
- Environment, neighbourhood and health
- Maintenance of health and wellbeing in the working age population
- Wellbeing in later life
- Innovation in health and social care services
We are particularly keen to receive proposals that have a focus on:
- Mental Health
- Early childhood health and development
The HealthWise Wales Resource
HWW has three components: People, Platform and Portal. HWW People comprise the HWW team at Cardiff University, Swansea University (SAIL and UKSeRP), Health and Care Research Wales and Patient and Public Involvement (PPI). The most important people who contribute significantly to the HWW resource are the 40,000+ participants. The HWW team are available to advise and assist you to decide which aspects of the HWW resource are appropriate to your research idea and to guide you through the application process.
The Platform is the survey’s virtual online interface comprising the HWW Website and Web Application (data collection tool). The Platform hosts both researcher led questionnaire modules and core HWW questionnaire modules. Both types of questionnaire data can be linked to the participants’ routinely collected healthcare data. The data collected from HWW participants are exported via SAIL for matching with routinely collected healthcare data and stored on the Secure Analysis Portal and Protected HealthWise Wales Information Repository (SAPPHIRe), which is implemented on the UK Secure eResearch Platform (UKSeRP). All data are accessed and analysed via SAPPHIRe.
Public and Patient Involvement (PPI)
HWW is about creating a partnership between researchers and the public, where everyone can be an active and equal contributor. PPI is an important component of every aspect of HWW and we aim to involve members of the public in consultation and in collaboration with the project management of HWW. Therefore, members of the public will be involved in scrutinising your research proposal.
We strongly advise that any researcher planning to apply to use the HWW resource contacts the HWW research team before submitting their application. The team can provide guidance and any additional information that researchers may need for completing the application process.
Before you apply, you should:
- Contact the HealthWise Wales team to discuss your project proposal
- Ensure you have/are obtaining the relevant ethics approvals, PPI and R&D approvals
- Read the HWW Resource Access Guidance for Researchers, which includes guidance on completing the application form and details on the approval process.
HWW collects data directly using web-based questionnaires (core-modules). The data available include information collected from HWW participants from core questionnaire modules, researcher-led modules (except where the researchers have requested time limited exclusive use of these data) and linked routinely collected healthcare data.
The data dictionary is available upon request and includes details on the data currently collected. Data that are currently being collected or going through the preparation process will be listed with dates of future availability. Any questions related to HWW data will be dealt with by the HWW project team.
There are a number of processes as outlined in the flow diagram that must be completed before data can be accessed. Once the questionnaire has been released to the online Platform it will be available to HWW participants for six months. Data collected from the questionnaire will be made available via SAPPHIRe as soon as data collection for that module has been cleaned, catalogued and released.
Currently, data are extracted every 10,000 recruits, but special arrangements can be made according to the needs of researchers who submit questionnaire modules e.g. some modules may be active for a certain time period to provide data for a specific follow-on grant cycle; other module data may be restricted to the researcher for a specified time period before being released for wider use. Depending on the complexity of the dataset, extracts take four to six weeks to process.
Upon request, data generated from researcher led questionnaires can be made exclusively available to the applicant for a period of up to 12 months. After this, the data will be made available to all researchers as part of the suite of HWW datasets.
Subject to data user verification, a data access agreement, and physical and procedural controls, data users are assigned a time-limited account to access their data view remotely via SAPPHIRe. System safeguards include a fire-walled Virtual Private Network (VPN), enhanced user authentication, auditing of all SQL commands, and configuration controls to ensure that data cannot be removed or transferred unless authorised.
HWW has been reviewed and approved by the Wales Research Ethics Committee 3 (reference 15/WA0076). If you are submitting a new questionnaire, for upload as a questionnaire module on the HHW Platform, the HWW team will need to apply for ethical approval as a substantial amendment and Information Systems (IS) development will not begin until approval has been obtained.
Yes. You must ensure you have/ are obtaining the relevant ethics approvals, PPI and Research & Development (R&D) approvals for your study. In addition, if HWW is uploading questionnaire modules this requires a substantial amendment to the on-going HWW ethical approval.
The cost for using HWW will be determined on a case-by-case basis depending
complexity of the proposed project.
This will be negotiated with the HWW team during development of the
It is the responsibility of the researcher to ensure funding is in place to
the research using HWW data.
You may wish to talk to us when developing your funding bid. We will be able to discuss costs with you and suggest how to integrate these into your research application.
We request that you acknowledge HealthWise Wales in any publications resulting from this collaboration. All researchers using HWW will be provided with standard text for the acknowledgement.
Example of projects supported by the HWW Platform
HWW has already supported a number of researchers to launch researcher led questionnaires on the HWW Platform. For example:
Skin Cancer Awareness:
To assess skin cancer knowledge, preventative behaviour and knowledge of Vitamin D in a sample of the Welsh population. HWW enabled the study team to assess how effective the current skin cancer prevention campaigns are in Wales.
To understand oral health behaviours (e.g. toothbrushing, pattern of dental service access etc) of children. This module is directed to the parents of children aged 2-6 years.
Using the HWW Platform has allowed the researchers to quickly access a large group of varied participants who are already engaged with research. This has enabled efficient and cost-effective data generation that can be linked to the SAIL databank.
HWW has also supported a number of studies with recruitment to their online surveys. These include the Heath and Senses study from Cardiff University’s School of Psychology and the Public Attitudes to Death and Dying survey from The Marie Curie Palliative Care Research Centre. Advertising these studies to HWW participants led to an instant increase in awareness of the research and the number of participants completing the surveys.
Reuse of medicines:
Medicines are the most common form of treatment used in healthcare. As such, a large amount of money is spent each year by the National Health Service (NHS) in Wales on medicines.
As NHS budgets are currently being ‘frozen’ or ‘cut back’, there is growing interest in finding ways of reducing waste and saving money in healthcare.
It has been estimated that around 200 tonnes of medicines go to waste each year in Wales. We would like to see the number of medicines which go to waste fall, but before this can happen we need to know how people store prescription medicines when they get them home from the pharmacy and how they currently get rid of prescription medicines which they don’t want anymore.
By asking HealthWise Wales participants their opinion on whether they think prescription medicines which are dispensed for a patient and not used could be re-dispensed for other people, we hope to disseminate the findings to inform re-use of medicines policy in Wales.
Reporting side effects of medicines:
Following the Thalidomide tragedy, it was recognised that early reporting systems for side effects to medicines could stop further tragedies from happening. The reporting system established in 1964 is called the Yellow Card Reporting Scheme. Members of the public are now able to report any suspected side effect to a medicine. Involving the public in the Yellow Card Reporting Scheme will provide more information about side effects, making medicines safer for patients.
This project will be the first part of a study to explore the publics’ awareness and knowledge of the Yellow Card Scheme. Members of HealthWise Wales will be asked to complete a questionnaire about the Yellow card reporting Scheme. The results of the questionnaire will help inform an intervention to increase awareness of the Yellow Card scheme and this in turn will be followed by another questionnaire to determine the effectiveness of the intervention. The results will help the Yellow Card Centre Wales plan activities to improve public awareness and knowledge of the scheme. Yellow Card Centre Wales seeks to encourage reporting of side effects of medicines from the public.
The All Wales Medicines Strategy Group (AWMSG) is a national advisory committee that aims to improve the use of medicines in Wales. Health provision should be a partnership between the healthcare professional and the patient (”co-production”). Involving the public in decisions on their medicines is essential to support a shared understanding of the issues and to deliver the best care for people living in Wales.
This project aims to assess the awareness of AWMSG, gauge the impact of an animated film explaining the role of AWMSG in advising Welsh Government on the introduction of new medicines in Wales, and to improve patient involvement in the work of AWMSG.
- Cohort Profile: HealthWise Wales. A research register and data collection and analysis platform with linkage to NHS datasets in Wales
- Data Resource Profile: The Dementias Platform UK (DPUK) Data Portal
- Patients’ reasons for consulting a GP when experiencing a dental problem: a qualitative study
- Public understanding of, and attitudes towards, data linkage in research
- Protocol for implementing the concept of citizen scientists for HealthWise Wales: a national population study
- Factors influencing the use of birth pools in the United Kingdom: Perspectives of women, midwives and medical staff
- Do carers care for themselves? A population-based study
- Mental health of carers in Wales: a national population survey
- Barriers to accessing cancer services for adults with physical disabilities in England and Wales: an interview-based study
- A qualitative investigation of participants’ experiences of engaging with the Health Wise Wales Initiative (Executive Summary) – A full version of the report is available on request
- Exploring and increasing public knowledge on adverse reaction reporting across Wales
- Assessing and raising public awareness about the approval of medicines in Wales
Prevalence of hidradenitis suppurativa is one percent of the population of Wales using the Secure Anonymised Information Linkage (SAIL) Databank.
Ingram, J., Collins, H., Atkinson, M. and Brooks, C. (2020)
Visually-induced dizziness is associated with sensitivity and avoidance across all senses
Powell, G., Derry-Sumner, H., Shelton, K. et al. (Journal of Neurology, April 2020)
Persistent postural perceptual dizziness is on a spectrum in the general population
Georgina Powell, Hannah Derry-Sumner, Deepak Rajenderkumar, Simon K. Rushton, Petroc Sumner (Neurology May 2020, 94 (18))
Health literacy and mental health in Wales: a national online population survey
P Ashfield-Watt, F Tseliou, S Paranjothy (2020)
Rhythm and Poetry: a narrative approach to engaging young carers with population health research
Tseliou, F., Paranjothy, S., Ashfield-Watt, P. (2020)
Abuse, self-harm and suicidal ideation in the UK during the COVID-19 pandemic
Iob E, Steptoe A, Fancourt D (The British Journal of Psychiatry, July 2020)
Developing and evaluating a model of public involvement and engagement embedded in a national longitudinal study : HealthWise Wales
Townson, Julia (Corresponding Author); Davies, Jan ; Hurt, Lisa; Ashfield-Watt, Pauline; Paranjothy, Shantini. (International Journal of Population Data Science, Sept 2020)
The Cummings effect: politics, trust, and behaviours during the COVID-19 pandemic
Fancourt D, Steptoe A, Wright L (2020)
Skin cancer knowledge and sun‐protection behaviour in Wales
S. Ziaj1, F. Tseliou2, R. Abbott1 (2020), Posters. Br J Dermatol, 183: 26-77.
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