Autumn Consultation 2022
What was discussed?
On 12th October 2022, our Sounding Board met virtually via Zoom and were consulted on the following topics:
· Ongoing GPW estates plans: how best to initiate collaboration, and encourage co-production and involvement at the new location
· Rare Disease Implementation Plan: how best to include the voice of the rare disease community in health and social care policy and research studies, and priorities in developing a virtual hub for rare disease patients
· The Genomics Delivery Plan for Wales: identifying key audiences and the best ways to reach them
Consultation 1: GPW Co-location of partners
Session lead: Nicholas O’Sullivan (GPW)
Findings regarding the co-location of a number of genomics organisations at the Cardiff Edge Life Sciences Park were as follows:
Importance of collaboration amongst teams and across partner organisations
- Use existing collaborative networks and organisations
- Communications; use of staff-led newsletters, bulletins and information boards to provide updates; mechanisms to facilitate staff in regularly providing feedback and dynamic media, such as video to help visualise site prior to co-locating
- Representation at meetings; representatives from relevant groups to attend and engage with multi-agency meetings, hosted by members of each partner group on a rotating basis.
- Building networks and connections; establish a flagging system enabling people to join discussions, to better develop ideas e.g. via Lunch & Learn sessions, social and networking events.
- Recruitment and retention of staff; could be enhanced by offering short and long-term secondments
Continue to develop and encourage co-production and involvement activities (patient/public)
- Networks; you stressed the importance of capitalising on existing collaborations with other organisations such as:
- Support networks and groups
- HCRW public engagement initiatives
- Other partner groups
- Communications; increased social media presence for better public engagement, newsletter for public consumption, cohesive comms plan which links into key awareness days
From a patient perspective, you raised the following around the scheme which we would need to specifically address:
- Location; accessibility of on-site engagement events with consideration of those travelling from further afield.
- Nature of engagement; this should not feel exploitative or tokenistic, with contributions publicly recognised and paid, where appropriate, whilst understanding barriers to involvement for under-represented groups and how these can be broken down.
- Creation of a permanent/semi-permanent platform to facilitate discussions.
Consultation 2: Rare Disease Action Plan
Session Leads: Jamie Ducker (Rare Disease Implementation Group Clinical Lead) & Rhiannon Edwards (Rare Disease Implementation Group Co-ordinator)
Findings from this consultation were as follows:
Including the voice of rare disease patients when developing wider health and social care policy
Patient networks and groups:
- Involvement of these groups in developing the plan, with engagement with patients directly via clinics or virtually on an equitable footing.
- Use of internet forums for patients with rare conditions.
- Develop an understanding of stigma attached to rare diseases within specific societal demographics to tailor messages and approaches accordingly
Other groups :
- GPs can act as conduit for their patients to empower their input to policy development
- Link up with charity networks e.g. Huntington’s Disease Association (HDA), Genetic Alliance UK
- Leverage existing experience, such as Welsh Government practice, to raise awareness.
The implementation of the Wales Rare Disease Action Plan and increasing the incidence of research on patients with rare disease
Improving awareness and improving access to available research trials via:
- Links with organisations, including HCRW and the Centre for Trials Research
- Improved promotion within pharmacies and via appropriate social media channels
- Print materials available in healthcare settings
- Dissemination of information through the education system
- Use of broader range of media and use of digital tools
Successful application to the Rare Disease Research Fund for the development of a Virtual Health Hub
Application should contain clear, accessible information explaining steps that need to be taken following a diagnosis and noting the importance of striking a balance. Information should include signposting to support for patient, family and carers following diagnosis and links to wider community/psychosocial support as part of Quality of Life measures.
Consultation 3: Genomics Delivery Plan for Wales
Session leads: Michaela John (GPW), Chris Newbrook (Genomics Policy Lead, Welsh Government)
Findings regarding the Genomics Delivery Plan for Wales and its dissemination to relevant audiences were as follows:
Appropriate audiences and their individual considerations:
- General public- extreme diversity within this demographic
- News agencies– general press releases plus specific and targeted news items
- Patients and patient support groups, especially those with genetic conditions and their wider family members
- Healthcare professionals – clinicians, GPs and other specialised departments
- Government bodies – including Welsh Government
- Academia –researchers and pharmaceutical companies involved in drug discovery research and development.
- Training – build connections and links to facilities and universities providing health and care training for the future workforce
- Commercial / strategic partnerships – fostering and nurturing links with industry through established networks such as Business Wales, and Development Bank of Wales
How we get this message out to these groups:
- Remain culturally sensitive when providing information to diverse community groups
- Use of flyers and posters in public and patient areas of the hospital
- Press releases/ published articles with clear messaging
- Internal and external comms via email or letters to agreed distribution lists and networks
- Phone calls for targeted and agreed communication
- Clinician stories, as well as patient stories
- Age-appropriate materials and resources to encourage interest in science and genomics - Consider how we can better incorporate genomics into school and university curriculum at all key stages and levels
- ‘Role models’ to advertise genomics services – relatable personalities who can help to break down barriers to understanding
- Consider how we can adapt and change for different audiences, being mindful that the tone and language is appropriate and accessible; with different age groups and diverse communities in mind
- Integrate ‘what genomics can provide’ by being included in other clinical pathways such as cancer, neurology, etc.
- Work out a communications plan to cover how we can ‘spread the word’ of the Plan with other workforce groups such as nurses, GPs and other Healthcare Professionals
- Consider urgency of sustainable funding for all aspects of the Partnership, including Wales Gene Park’s Education & Engagement team – who are vital in delivering key engagement activities.