Spring Consultation 2022

Spring Consultation 2022

What was discussed?

On 6th April 2022 our Sounding Board met virtually via Zoom and were consulted on the following topics:

 

  • Future Plans for GPW Public and Patient Involvement
  • Format of future meetings
  • Recognising achievement · Engagement plans (session led by Wales Gene Park)
  • Genomics Delivery Plan for Wales  (Session Led by Welsh Government)

 

Hear from our Sounding Board Member, Karen, who attended on the day, on what she learnt from the consultations and her main highlight from the sessions:

Consultation 1: Future Plans for GPW Public and Patient Involvement

Session Lead: Michaela John, Nicholas O’Sullivan (GPW Programme Office) 

 Incidental findings regarding the format of future meetings were that both online and face-to-face events have benefits and disadvantages, with some concerns around hybrid delivery if not properly facilitated. However, members were interested in exploring the possibility of at least one meeting annually in a hybrid format, considering the details below: 

 

  • Hybrid meetings – organisation and facilitation- Technology must be optimised with sessions correctly facilitated to ensure ease of equal contribution from all attendees. A central location must be selected for ease of access by transport for those attending in person. 
  • In-person meetings – Can allow for greater degree of empathy than virtually, where conflicts can be more easily resolved. 
  • Online meetings- Can provide easier access for those with rare conditions although access for some may be inhibited by varying digital infrastructure across Wales. Provision of good-quality headsets suggested in lieu of travel expenses to ensure better audio connectivity. 

 

Regarding recognition awards, it was agreed that there should be a mechanism to show appreciation and recognition for exemplary work, however, there would need to be an agreed approach that recognises: 

  • Assessment process – staff-nominated teams and individuals to be assessed using a panel-based approach involving Sounding Board and other GPW members.  
  • Considering best practice and recognising achievement across Wales- Awards as recognition of achievement which serve to recognise the importance of research to encourage further innovations across Wales.  
  • Other awards/recognition for GPW- GPW could be nominated by other organisations with  collective endorsement from Sounding Board members, who recognise the need to promote and celebrate achievements to wider clinical, academic and patient/ public audiences.  

   

GPW Programme Manager, Michaela John, speaks on the importance of Sounding Board Consultations and their role in shaping the wider GPW Programme:

 

Consultation 2: Genomics Delivery Plan for Wales

Session Leads: Chris Newbrook (Welsh Government); Clare Gabriel, Karen Shepherd (GPW Sounding Board members) 

The Genomics Delivery Plan for Wales was shared prior to the meeting and progress to date on its development was provided alongside a proposed introductory presentation, for input and feedback from the Sounding Board, which was summarised as follows: 

Delivery Plan  

Comments on current plan:  

  •  Comprehensive, understandable and clear with a lot of hard work and evidence demonstrated 
  • Overall purpose and audience of the document unclear 
  •  Baselining – It is vital to establish the baseline in order to identify the challenges and demonstrate progress in the future using evidence.  
  • Benchmarking – it is important to understand the benchmarks against international standards. Quantifiable and measurable metrics are needed to show delivery 
  •  Family practitioners – important to understand what the referral pathways are for GPs, recognising the integral role GPs will play in genomics 

 

Recommendations for improvement : 

  • Present information in visual forms (such as charts, infographics, videos etc.) would help to make the document easier to understand for a lay audience.  
  • Provide information in an interactive format and allowing easy navigation between sections would help to make the content more engaging  
  •  Linking resources to real-life patient stories would help to humanise genomics.  
  • Emphasise what positive impact these ambitions would bring to the general public; pharmacogenomics would be a very good illustrative example of an area of interest to the general public  
  • Costs involved should be included for transparency 
  • Clear timelines for delivery need to be set out, formatted into annual deliverables over the three-year term 

 

 Draft presentation feedback  

  • The presentation should begin with a patient story to show the impact genomics has; references to the Sounding Board should be prominent in order to demonstrate our commitment to putting the patient first 
  •  The presentation should be more visually simple; slides less ‘busy’ or complex 
  •  Presentation delivery / cadence was highlighted as important to ensure engagement  
  •  As with the consultation document, this presentation would be fit for purpose for internal stakeholders, however, it is not suitable for broader patient audiences 
  •  Attention-grabbing figures (such as rates of adverse drug reactions falling or increased cancer survival rates) should be quoted to show the real impact for patients of genomic testing 
 

Chris Newbrook speaks on the Genomics Delivery Plan for Wales and the value of input from the Sounding Board: 

 

Engagement Plans

 Engagement Plans Session Leads: Angela Burgess, Rhian Morgan and Rhys Vaughan (Wales Gene Park)  

 Following the delivery of their presentation, the following comments were made: 

  • Caution should be used when communicating about development delay in children and vulnerable adults; important that resources are developed and used sensitively and information is clear
  • Visual storytelling, for instance through videos, is a good way of demystifying genomics, including concepts such as pharmacogenomics, for a broader audience 
  • Emphasis on the power of public consultation and feedback, and thanks to both GPW and Wales Gene Park staff for the work that they have done to date 
  • With pharmacogenomics it was clarified that any testing in this area would be in the form of targeted panels, as opposed to broader whole genome sequencing (WGS)

Programme Updates

 The following updates from the Programme Office were also given during the day : 

  •  Work around co-locating GPW partners (AWMGS, Pathogen Genomics Unit, Wales Gene Park) to a single site in North Cardiff is progressing well  
  • Installation of a second NovaSeq, funded by Welsh Government, has been completed, increasing sequencing capacity. Digital work is underway to improve usability of this instrument 
  • Public Health Wales’ Pathogen Genomics Unit (PenGU), a key GPW partner and the first SARS-CoV-2 accredited service in the UK, has recently sequenced over 200k samples 
  • Pilot of a new psychiatric genetics services, the subject of a previous consultation, has now been introduced