Health Wise Wales (HWW) has a register of 28,000+ participants that are ready to take part in research studies.
HWW aims to recruit at least 100,000 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:
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:
We are particularly keen to receive proposals that have a focus on:
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 28,000+ 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.
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:
Please send your completed application form, with the required approvals and documents, to HealthWiseWales@cardiff.ac.uk
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 on the complexity of the proposed project. This will be negotiated with the HWW team during development of the application. It is the responsibility of the researcher to ensure funding is in place to complete 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.
Please see the Application Process section for how to apply to work with HWW.
HWW has already supported a number of researchers to launch researcher led questionnaires on the HWW Platform. For example:
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.
"We are absolutely delighted to get an amazing support from HWW who believe in public-driven research. Waiting for the ethical approval was worthwhile as it added about 900 participants to our survey. HWW has made a significant contribution to the quality of our study."
“We received a really fantastic response to the survey from Healthwise Wales volunteers and are so thankful to all the participants that took part. The aim of the study was to build up a detailed profile of who is likely to suffer from dizziness and who is not. We were particularly interested in whether individuals who frequently experience dizziness are also more sensitive across all of their senses (e.g. touch, smell, taste). We are currently conducting analyses to explore the complex interrelationships between dizziness, migraine, sensory sensitivity and anxiety. Rehabilitation of dizzy patients is often challenging and we hope that by understanding the ‘bigger picture’ we can develop treatments that target the condition from a number of different angles. Something that has been apparent in the data we have looked at already is that dizziness is common in the general population and is potentially underdiagnosed. We are hoping to present a subset of the results from the study at a vestibular conference in June, and after this, we hope to publish a paper on all our findings. Our next steps are to design a rehabilitation game, using the findings from the survey, to help patients with chronic dizziness. We are also planning follow-up studies in our laboratories at Cardiff using virtual reality and brain imaging to further explore the causes of dizziness.”
“Working with HealthWise Wales to recruit participants to our study of dental conditions was excellent. I am grateful to the HWW team for how helpful they were throughout and how efficiently they managed the approvals process. We were delighted with the response to our study invitation and hope to work with HWW in the future.”
“I am so grateful to the whole team at the HWW for their efficient, helpful and professional attitude. The process of creating an online survey and the submission of HWW New Questionnaire Proposal has been easy and smooth. Particularly, help with the specific promotion materials for our survey at different events was exceptional. I believe the HWW project is one of the best examples of creating excellent research platform at minimal cost and hope to collaborate with HWW in the future”.
“I lead a team of researchers trying to understand the best ways of helping people manage infections like coughs and colds, while trying to minimise the unnecessary use of antibiotics which leads to the development of antibiotic resistance. We wanted to understand the reasons why member of the public go and see a general practitioner when they have a cough or a cold, and what alternatives they might consider. HealthWise Wales was an ideal tool for us to get views from a large number of people in Wales, and it is especially useful as we are able to link people’s responses to data from primary care about how often they actually consult and / or get antibiotics. The Healthwise Wales team helped us design and implement the questionnaire and we were able to get responses from nearly 9,000 participants. This data should help us design better ways of helping people deal with these common problems.”
“Healthwise Wales offered us an excellent way to recruit research participants from across Wales. As a team, we have nothing but praise for the HWW team; they were outstandingly helpful, helping us spread the word about our study to a large pool of people. “
“Our study aims to assess skin cancer knowledge, preventative behaviour and knowledge of Vitamin D in the Welsh population. We chose to collaborate with HWW to enable our survey to reach a large sample of the Welsh population and we found the application process straightforward. Our survey opened in October 2017 and closed in October 2018 and had over 6115 respondents.”