Autumn Consultation 2021

What was discussed?

On 10 November our Sounding Board met virtually via Zoom and were consulted on the following topics:

  • Developing a Welsh Action Plan for Rare Diseases
  • Upskilling and mainstreaming genomics through education and training opportunities for healthcare workforces
  • Setting PPIE Priorities for the coming year

Consultation 1: Rare Diseases: Developing a Welsh Action Plan

Session Leads: Emma Hughes (Policy and Engagement Manager – Wales – Genetic Alliance UK); Dr Graham Shortland (Consultant Paediatrician – Noah’s Ark Children’s Hospital of Wales; Chair of RDIG)

The new UK Rare Diseases Framework, published in January 2021, sets out four priorities detailing how the UK will address the challenges faced by those living with rare diseases:

         Helping patients get a final diagnosis faster

         Increasing awareness of rare diseases among healthcare professionals

         Better coordination of care

         Improving access to specialist care, treatment and drugs

The Welsh Governments’ Rare Disease Implementation Group (RDIG) has been tasked with developing an implementation plan for this framework in Wales (by April 2022); this consultation is part the plans to ensure the voice of those affected by rare diseases remains central to the development of a Welsh response.

Summary of key points
  • Patient empowerment and shared decision-making; tailor care to the individual
  • Improved co-ordination between clinicians in different specialties and geographical areas
  • Easy access to full patient health records for clinical teams
  • Increase awareness in healthcare community
  • Clear signposting and referral pathways for support, diagnosis and treatment
Consultation Lead Comments / Next Steps

Emma & Graham will take all your comments on board and are currently running other patient engagement sessions to feed into the development of the Welsh implementation plan

Consultation 2: Genomics Education: Upskilling and Mainstreaming Genomics throughout healthcare workforces

Session Lead: Dr Alex Murray (Clinical Lead for the All Wales Medical Genomics Service; Chair of the GPW Workforce & Training group)
Other colleagues observed the session: Gemma Roscrow and Keri Jones (NHS Wales Shared Services Partnership – Procurement Servics); Hilary Wickett (Health Education and Improvement Wales)

An overview was provided of current genomics education provision through the MSc and the rationale behind changing to a more modular course delivery. Noted that uptake for a full MSc is historically low, and may not represent the best investment in terms of funding; the aim is that a modular basis to funding courses would increase uptake and widen reach across healthcare specialists. The group was split into three breakout sessions where they were asked to consider the following:

  1. Their thoughts on the proposed new model for delivery of genomics education to the wider healthcare workforce
  2. How will we measure the impact of this new approach (modular delivery) to demonstrate that the introduction of these changes has made a difference for patients and the quality of their care?
  3. Are there any other aspects of educating the wider healthcare workforce in genomics that we have not considered?
Summary of key points
  • Making relevant modules a part of mandatory training, regular appraisals and CPD to ensure staff who need the knowledge will engage
  • Thinking beyond healthcare professionals – providing some foundational resources that can be of use to interested members of the general public
  • Gain better understanding of the current barriers to attendance, e.g. variable support for study leave
  • Consider how to incentivise healthcare professionals (non-medics) to complete modules
  • Vital to relate to patient benefit – use of real-life patient stories and examples; linked to ensuring content is demonstrably relevant to clinical practice
  • Reinforce and encourage reliance on self-motivation to learn new skills acknowledging that some staff may be more resistant and require more support and opportunities to participate
Consultation Lead Comments / Next Steps

Output will inform the procurement process for the modular delivery of genomics education to the wider healthcare workforce in Wales. In recognition of the need for education resources to made available to a broader, public audience, you were signposted to and the Genomics Education Programme (GEP) provided by Health Education England

GPW Patient & Public Involvement & Engagement (PPIE) Priorities

Following on from previous discussions around expanding GPW PPI you were asked:

  • What do you feel would be the next step or priority to increase GPW’s involvement work?
Your Suggestions
  • Overwhelming message was to raise the profile of GPW and genomics, to increase our impact
  • Increase media (social and traditional) coverage to raise awareness – include broader campaigns and local promotion of good news stories on a regular basis
  • Resources to support Sounding Board members as advocates – provision of standard material (letters, presentation templates) and relevant training to ensure consistent messages are given
  • Use Alumni group – previous Sounding Board members can be involved with promotion of genomics; also have a wealth of knowledge to allow them to provide evaluation of programme
  • Utilise research groups with PPI experience to reach more people and share best practice; link to their established involvement work to enrich our approach
  • In addition to Sounding Board members being present on Governance & Programme Boards, you suggested that they are included in other GPW implementation groups such as GPW Communications group
  • Reach out to educate a broader range of the public, including schools and 6th Form colleges – important to tailor content according to the audience target age group as appropriate
  • Reach out to voluntary organisations, such as Wales Council for Voluntary Action, Health and Social care networks, C3SC (Cardiff-based) and Seren Network (6th form students) to share the work of GPW more widely and raise awareness
  • Increase engagement to raise profile prior to further recruitment of new Sounding Board members to ensure better diversity and representation of Welsh population