Spring Consultation 2021
What was discussed?
On 15 April our Sounding Board met virtually via Zoom and were consulted on the following topics:
- Our approach to co-production
- Genomics Showcase
Consultation 1: Our approach to co-production
The day began with a summary of the planned review of the Genomics for Precision Medicine Strategy, co-production to date and how the team want to ensure patient involvement during the review process. Some of your thoughts included
How effective is our approach to co-production?
In your own words:
“It is important to ensure the patient’s voice is heard and is part of the bigger picture”
“The Genomics Sounding Board strength is that it actively seeks out the patients’ experiences and patients’ voice ensuring they are listened to and input generates the development of quality services for patients across all of Wales”
“Sitting on this Board and the other groups have confidence in the way you approach everything in such detail is excellent”
“I am continually impressed by how dedicated the scientists, healthcare professionals and other professionals have always been. The patient reps are always welcomed and involved, and our comments are always taken into account”
“This is one place that researchers, Welsh Government and clinicians come face to face (with the public)”
“When you need the NHS in Wales you need to know you can trust the service, knowing there is Public and Patient Involvement in a service gives you piece of mind that ideas and opinions are valued. Being listened to is very powerful, giving people a voice to contribute to positive change”
Additional Feedback
Combatting information overload was a key theme in discussions, with more reflection time to be built into consultations, making time for feedback after the event. This additional time for reflection could create more active discussion, allowing for group growth.
Frequency of Meetings: Need to address current ‘down-times’ between Sounding Boards with more regular contact in-between board meetings, and perhaps shorter meetings at more frequent intervals
Format of Meetings: Moving to online delivery of consultations through Zoom has ensured equity of access, removing regional / geographical barriers to attendance. Keen to retain some hybrid flexibility to future meetings even when face to face meetings can resume
What aspects of genomics is important for future involvement of our patients and the public?
In your own words
“Having a voice and being able to influence your treatment helps achieve better outcomes for you and improves your sense of health and wellbeing”
“Strengthening the patient voice can only improve genomics policy, practice and research”
“Personal stories and experiences are a powerful and convincing argument for changing health and care services to benefit the user”
“The more that patients learn about Genomics and the ways their health can be improved, the more the NHS can help the health of the general public. It also enables the patients to challenge their treatment”
Are we consulting on the correct subject areas? Are there key areas that have not been included?
You were happy with the subject areas which you are consulted on. With this in mind you stressed the importance for the group to receive and give feedback beyond the consultation sessions themselves, perhaps in the form of a crib sheet on subject areas consulted on, to see how they fit together and compare/contrast against one another. Further comments arising from discussions included:
- Consider how other PPI programmes, such as Royal College of Physicians work, and whether this model can be adapted to GPW’s requirements
- Consider frequent themes within genomics and issues faced during engagement, including diversification across the cohort through fair representation from marginalised communities
- More effort should be made to design processes to ensure Welsh and English language receive equal treatment, currently Welsh website is very much out of date
- With rapid change there needs to be a more united comms strategy in regard to presentation of outputs from consultations
Next Steps
- Programme Office agreed to circulate a summary of discussions following consultation sessions to allow consideration of outputs in the interim
- Programme Office agreed to address the length of time between meetings in developing a more rigorous approach to documenting and reporting outputs to ensure reciprocal involvement and increase involvement and engagement
Have we performed against our objectives?
In general the Sounding Board felt that, given the challenging circumstances of the past twelve months, GPW has performed well, but that there is also room for improvement
Are there any additional objectives around co-production which would be important to include in the future?
Review the purpose of the Sounding Board to ensure it is utilised effectively moving forward to drive broader public discussions. Need to identify what involvement should look like, including better utilisation between meetings (for instance Rally for Rare, Genomics Showcase, etc.)
How should we regularly communicate key GPW activities and achievements to the general public?
- Important to gather and maintain momentum releasing regular snippets, packaged in smaller chunks thematically for public consumption
- With Twitter use of short, snappy paragraphs and press releases alongside greater utilisation of the website – such as using QR codes to drive traffic to it
- Utilise existing network of contacts, such as GP surgeries or outpatient clinics, to disseminate information in a format that can be printed and put on notice boards and other high ‘traffic’ areas, such as bus stops
Do you have any suggestions about how these communications can be co-produced?
- Understanding or agreement with Welsh Government to link with their comms
- Important to include members of the Sounding Board at the earliest possible stage in preparations for an event or developing press releases. Representative from the Sounding Board to sit on the Genomics Comms Group would be key to achieving this
- Develop a matrix approach so that GPW comms does not happen in isolation, identifying common themes across the partnership and other precision medicine programmes to make best use of resources
- Learning from other examples is key to ensuring best practice, such as recent re-vamp of Velindre’s outward facing presence
Consultation 2: Genomics Showcase
How do you suggest we promote this event to reach as many members of the public as possible given the short timeframe?
- You agreed to share promotional information about the Genomics Showcase across your networks, and with family and friends. Other networks to use to promote include the Genomics Café networks which have grown over the last year, and cross-promoting across all relevant social media and other channels (e.g. local/national press, BBC, etc.) • Important for the sign up process to be as easy as possible
- A timetable/summary would be helpful for informing individuals when things may be happening that that they are interested in and facilitate people dipping in and out on the day
- A short video describing the day would be effective in promotion, utilising a range of representatives, including Sounding Board reps
- Recording of talks and presentations which can then be used as content on YouTube to drive up interest in future events by showcasing the high calibre of the event
- The need to be bilingual in Wales was stressed. To accommodate multi-language support (e.g. English and Welsh) perhaps include a way of recording individual language requirements when people sign up
- The event should be promoted on a wider UK and international level, showcasing the ambition for Wales to become a world-leader in genomics, from clinical innovation to cutting-edge research
At the Showcase, how do we promote the opportunity to join the GPW Sounding Board?
Utilising both the GPW stand and the Genomics Café will be key to promoting this opportunity at the event. Beyond the event it is vital to use other networks as appropriate (such as HCRW, CRUK, MIND, etc.) in addition to more traditional promotion (posters in GP surgeries, mailshots, etc.). You also felt it was vital to reach out to underrepresented groups through special interest groups and local authorities.
You kindly consented to co-produce a video explaining the Sounding Board to encourage new members to join (many thanks for those who took part at such short notice to produce this for the event. It was very well received on the day and we hope it has encouraged a few to sign up)
What would members of the public want to know about in terms of the following areas:
- Genomics Strategy in Wales?
You felt it was important to give a history of Genomics Partnership Wales, what we set out to achieve, and what has been achieved
- Genomic services/research in Wales?
The Showcase would be a good opportunity to focus on good news stories to promote services and research in Wales. Genomics-related services in Covid response being really important to highlight
- Genomics generally?
You felt that it was important to have introductory sessions explaining genomics and describing how it will change medicine, using graphics that are easy to understand – such as a video. You suggested colour coding talks/presentations to indicate the amount of prerequisite knowledge which will be required to help people choose the most appropriate session to attend.
For future Showcase events, how do we ensure that we co-produce the event with our patients and the public?
Evaluation
As much notice as possible would be needed for future Showcase’s to ensure that the event can be effectively co-produced. Understanding prescribed goals for what the event is meant to achieve (such as increasing awareness of genomics and the Strategy) to measure against is key to learning the lessons from this event. Building on existing networks such as the Sounding Board, including in the evaluation process, would help to ensure feedback is taken on board, and the event is evaluated in a co-produced way
Logistics
You were keen that logistics should be considered to make the event accessible, with a hybrid approach (face to face and virtual) being the best in the future. It is important to consider this, especially with harder-to-reach groups, such as young carers, who may not be able to travel to the event. This hybrid model could also be utilised with the Genomics Cafés
Communications
The Sounding Board should also be involved more in comms and helping to promote future events, with the potential for a representative to sit in the Genomics Comms Group. Utilising each member of this Board to build GPW awareness through existing networks on social media, and actively checking what is happening in those other networks. This will highlight potential opportunities for collaboration and partnership working. These channels can be used to help identify topics for inclusion, encompassing a broad spectrum of experiences through a range of content
Active Participation
You were very keen for Sounding Board members to be actively involved in events, and a number of you agreed to volunteer to co-produce short videos of their experiences on the Sounding Board. Other suggested forms of involvement included co-chairing or facilitating sessions, and being involved in a Showcase sub-group to plan key aspects of the event; this will be vital to the success of both this and future Showcases
