Developing and delivering a deliberative approach to public engagement and participation on data usage in health and care in Wales

Description

Underpinning our work around data is the priority we place on discussion with the public about how and why we use data about them for different purposes. This is a core principle of the Statement of Strategic Intent. The need for good public engagement around data sharing has also been emphasised in the recent report on the use of health data for research, Better, broader, safer: using health data for research and analysis. We know this is a key element of building public trust and demonstrating that the organisations who use health and social care data are trustworthy. To support this engagement we are seeking an experienced and expert supplier to work with Social Care Wales and their partners in developing and delivering a deliberative approach to engaging with the people of Wales about the use of health and social care data. Aims and objectives The aim of this project is to launch our public engagement work around the sharing of health and social care data to support direct care, analysis for service improvement, and research. This work will help us identify how the public views the balance between privacy and using health and social care data for different purposes. It will allow us to identify what we can do to demonstrate trustworthiness. We have included a discovery phase in this project because we recognise the need for expert help to define a clear scope, purpose and approach for our deliberative engagement work. We will use the outputs and learning to support Welsh Government’s Data Promise project and inform the development of further ‘data policy’. Outputs We require: - a discovery report, setting out the options for the engagement approach - a detailed report on the findings and recommendations from the engagement - an executive summary of up to 10 pages - a repository of the engagement design documentation, materials and outputs to maximise the transparency of the process. Lot 1: Approach We are seeking an experienced supplier to undertake a discovery exercise to inform an approach and plan for deliberative engagement with the public about the use of health and social care data. a. Discovery - Requirements gathering from key stakeholder groups and project sponsors (Including the National Data Resource and Data Promise working group). - Looking at existing work that has already occurred on engagement with the public about the use of data (UK and international). - Understanding potential issues that are unique to Wales, including the needs and challenges of engaging with particular groups of people. - Agreeing goals, scope and objectives. - Developing specific use cases into engagement exercises. - Present recommendations and a plan for public engagement, including whether events will be held in person or on-line. The financial pressures on public services following Covid-19 are well known. These pressures present some uncertainty with respect to budgets for data projects in health and social care. Suppliers should therefore present a range of options in the discovery report for our deliberative engagement approach. These options should include a variety of methods for delivering the objectives of this work as well as value for money. Options should be presented with the respective pros and cons of each approach outlined along with cost and project duration. Suppliers should provide at least two options within the budget range of GBP 75,000 to GBP 250,000. A break-clause will be in effect at this stage which would allow the supplier or Social Care Wales not to proceed to the next phase of work should they choose. b. Delivering deliberative engagement events - Development and refinement of the questions for a deliberative engagement process, recognising the existing legislative arrangements around data - Design and delivery of the engagement events, including: ~ Sampling, recruitment and support of citizens, with attention to sel-dom-listened-to and hard to reach groups, including but not limited to those with protected characteristics ~ Identification of suitable expert witnesses with support from Social Care Wales, NHS Wales, Welsh Government and their partners ~ Detailed reporting and outputs to inform decisions on data sharing and infor-mation governance in Wales Depending on the preferences of the citizens, the supplier should be ready to conduct the engagement events in both Welsh and English, using simultaneous translation. All outputs, data collection, and project communications must be made available in both Welsh and English, in accordance with the standards outlined in Section 5.1. The cost for translation and quality assurance of the translation should be included within the price schedule and the potential supplier must set out how this requirement will be met. The supplier will have a good understanding of the requirement to provide bilingual services and will either offer the in-house capability to deliver such a service or have in place a service level agreement with a sub-contractor to support its delivery of bilingual services. A list of translators who are members of the Association of Welsh Translators and Interpreters is available at: https://www.cyfieithwyr.cymru/en/find-a-translator-interpreter. The supplier should ensure that the Welsh language version is treated no less favourably than the English and is fully fit for purpose and ready for publication. We expect the supplier to take a collaborative approach to both stages, working with our partner organisations across Wales. Adopting meaningful co-production and co-design approaches should form part of the preparation for this work. We are committed to improving equality, diversity and inclusivity in all our work and will expect this priority to inform the make-up of participants in the engagement exercises. Additional information: Phase 1 – Discovery: GBP 25,000 Phase 2 – Design and delivery: up to GBP 250,000 - Discovery report to be delivered by early February 2023 - Design and Delivery phase to commence in February 2023 with all engagement exercises to have concluded by July 2023 and final products delivered by 31 October 2023.