Winter Consultation 2023
What was discussed?
On 19th January 2023, our Sounding Board met virtually via Zoom and were consulted on the following topics:
· A new incidental findings policy which was developed in consideration of previous Sounding Board feedback
· The Genomics Delivery Plan for Wales – Proposed communications approach
· The Genomics Delivery Plan for Wales – Proposed Programme Approach to Implementation
Consultation 1: Incidental Findings (IFs) Update
Session Lead | Angharad Williams (Core Rare Disease Services Lead, AWMGS)
The work done to date on a new Incidental Findings Policy, and the key areas where this consultation showed real benefits, with Feedback was follows:
- It was appreciated that a ‘one size fits all’ approach was not taken forward, with the decision being made whether to disclose IFs to the patient being made on a case-by-case basis depending on patient choice.
- It is key to link in with research areas where there is potential for patients with certain Incidental Findings to be offered the opportunity to enrol on clinical trials.
Consultation 2: Genomics Delivery Plan for Wales – Communication Approaches
Session Leads | Nicholas O’Sullivan (GPW Programme Office) | Rebecca Johnson (GPW Senior Communications Officer)
We next presented some approaches to consider when targeting communications around the Delivery Plan. This was highlighted as critical to: define where all information should be brought together into a single area as part of a whole systems approach to promote transparency, by providing downloadable resources on GPW website, and promoting ‘choice’ in all communications.
It will be key to engage with different groups and communicate key messages and deliverables for genomics that are relevant to them:
- Targeting primary and secondary schools, in addition to colleges and universities, to foster greater interest in genomics from an earlier age.
- Examples of materials whilst setting realistic expectations around timelines and impact of activity
- Use Delivery Plan as a launchpad to commission broader publicity, whilst also targeting individual audiences
- Consider how to present information to patients and wider family members in relevant environments e.g. within testing and healthcare settings
- Build network development activities, linking patients on clinical pathways with the professionals in their areas
- Clinicians on cancer pathways will need to know who to target in order to address whether they have information and capacity (time/resources) to refer for genomic testing and how these referrals will be undertaken.
- Differentiate between those receiving (patients – see above) and delivering cancer care
- Address the knowledge gaps in different hospitals and teams, which do not fit into a ‘standard’ mould, addressing inequalities in how services are provided – especially when services are new
- Acknowledge varied interest levels and criteria for reaching this group as well as overlap with rare disease patients, ensuring communications contain the correct level of detail.
Consultation 3: GPW Programme Approach to the Genomics Delivery Plan for Wales
Session Lead | Michaela John (GPW Programme Office)
We explored approaches we should take as a programme in implementing the Genomics Delivery Plan for Wales, considering:
What criteria may be important to consider when prioritising deliverables in the genomics programme?
- Consider what the deliverables are, and order these in terms of short, medium and long term deliverability, whilst assigning realistic timelines and budget to each and aligning these with other UK nations.
- Legacy deliverables which existed in previous plan should be prioritised
- Consider any interdependencies; using graphics to visualise
- Transparent conversations with the public to clearly demonstrate the measurable impact of genomics on health and quality of life
- Ensure that diversity is represented at all levels of the programme, consider ways of reaching groups who are not traditionally engaged
- Continue to consult the public on future developments through the Sounding Board and other forums
- Involve staff, include genomics in annual e-learning and CPD opportunities to facilitate this
How will we understand how well we are doing and how do we measure our success?
Our current workforce
- Encourage staff to engage in reflective practice to consider what they know and identify any gaps in their knowledge
- Quantifiable metrics around how many staff have completed their annual e-learning or CPD modules or staff survey
Our future workforce
- Adding more genomics into GCSE and A-Level curriculum to achieve increased genomics knowledge across Wales
- Metrics on students leaving university and moving into genomics-related NHS roles
Patients and the Public:
- Engage and interact with the public in new ways through creative channels
- Address inequalities within certain patient groups
- Gain better understanding of current testing infrastructure
- Measure the improvement in patient experience for health and quality of life, through good news stories, social media and statistics
- Achieve more diverse audience reach, especially those communities we don’t normally hear from, to gather feedback
- Tailor messages to the audience
- Generate insightful piece to help demonstrate how we can measure our success and highlight the significant improvements in genomics understanding over the last ten years
How can the GPW team involve patients and the public in evaluating delivery of the Plan?
Ensuring consistency and building trust relationships
- Provide surveys/questionnaires from a trusted source (such as a GP or a clinician), as soon as possible after an appointment
- Use of qualitative measures, such as interviews alongside quantitative metrics, to add a human dimension and encourage more involvement
Developing and expanding co-production
- Creating an honest environment with capacity for patients to find solutions for themselves if needed
- You praised our current engagement work and wanted to see the Sounding Board model expanded, encouraging others to adopt a similar model
- Demonstrate where we have made an impact; providing more updates on progress following consultations
- Increasing the number of consultations and available involvement opportunities
- Appoint lay representatives in key project activities (such as communications)
- Establishment of a communication network to spread messages targeted to appropriate groups
- Create a platform for people to discuss issues in between meetings/consultations
- Build connections with those involved with other organisations across the healthcare sector in Wales.
Communications & Engagement
- Utilise the same metrics used by Wales Gene Park regarding footfall increase since launch as a crude measure of impact. Development of databases to record metrics, and a communications strategy would help to capture the impact
Following these breakout groups, we discussed the topics as a whole group and the following key points being raised:
- Budgets & Funding – you noted the importance of getting public support in order to secure funding into the future.
- Research & Innovation – you asked where the new genomics centres would be in south and south west Wales (we can confirm that the hub for the national services will be in Cardiff with plans for a linked centre in Swansea for the South West)
- Future Consultations – you felt that the topic which was consulted on this afternoon was very pertinent, however you would like to see it brought back to future consultations and discussed earlier in the day
- Disabled access to Cardiff Edge – concern was raised around public transport in the Cardiff area when we move to Cardiff Edge