Summer Consultation 2022
From 6-7th July, our Sounding Board members met virtually via Zoom.
Day One
Our new members were introduced to some of the basics of genomics and the GPW programme, including our communications approach and future plans.
During these sessions, a number of key points were raised:
- The importance of explaining genomics in a simple way to broader patient and public groups, with a view to enhancing patient voice to contribute to the improvement of healthcare services.
- The need to address challenges and barriers relating to accessing of individual’s healthcare data and their impact on testing and treatment.
- The need to further raise the profile of the GPW Sounding Board through increased presence at relevant events and within particular groups, to highlight Sounding Board involvement in key developments in genomics across Wales.
- The value of increased governance of the Sounding Board to improve its effectiveness; ensuring appropriate tracking of key contributions and outcomes and dissemination of such contributions across wider groups and communities.
Terms of Reference review
A review of the Sounding Board’s terms of reference is required to ensure the inclusion of details of the Alumni Network, which allows former members to remain involved in the programme once their tenure comes to an end.
Day Two
What was discussed?
New members then took part in their first consultation alongside the existing Sounding Board cohort, and were consulted on the following topics:
- Pharmacogenomics panel testing
- Consent for genomics data use in research
Consultation 1: Pharmacogenomic panel testing
Session Leads: Aine Moylett, Becky Harris, and Michelle Wood (All Wales Medical Genomics Service – AWMGS)
Advancements in our understanding of how our genetics can affect the way in which we respond to certain drugs will have a profound impact on treatments provided to patients in the future including:
- Improving the effectiveness of drugs
- Reducing of adverse reactions to drugs
- Reducing overall costs to healthcare.
The All Wales Medical Genomics Service are working with Bangor University to develop what an effective implementation of this service could look like.
Summary of Group Discussions
- Equality, Diversity & Inclusion. Work to ensure accessibility of information for all to support understanding and improve experience for all, whilst being mindful of cultural sensitivities and stigmas which may exist when seeking consent for testing.
- Patient – centred care. Reduce undue stress and anxiety by taking a patient-led, tailored approached to providing explanation for selection of drugs for individuals, with clinical team being best placed to provide this and seek informed consent from patient whilst ensuring they fully comprehend implications via clear, factual communication and use of relevant statistics.
- Implementing pharmacogenetic testing in healthcare. The need for seamless integration between pharmacists and GPs to ensure timely awareness of any potential issues with prescribing. Larger testing panels noted as more cost- effective with the understanding that these would sometimes result in longer lead times. Delay in beginning treatment should only occur should there be risk of serious harm as a result of wrongly prescribing. Test results and clinical decisions should be communicated verbally and then followed up in writing to facilitate individuals’ record keeping.
Session Leads: Rhys Vaughan (Wales Gene Park, GPW Consent Manager)
It is imperative that the patient data generated by genetic of genomic testing is retained safely, securely, and in accordance with legal regulations. It is also important to recognise how powerful this data can be as a tool for researcher analysis.
Although there are mechanisms in place elsewhere within the healthcare system, there is currently no process for the routine collection of genomic data in Wales; clinical, academic and legal colleagues are working together to understand the options for establishing this.
Summary of Group Discussions
- The Consent Process. Gaining informed consent from the patient at an appropriate time is important, with informative materials being made available digitally and in print following consultation and the discussion being led by a trusted person; who should stress that treatment will be in no way affected should they refuse to provide consent or withdraw it at later notice.
- Cultural considerations. Certain cultural and societal factors may make gaining consent from certain individuals more challenging. It is therefore important to be mindful of cultural sensitives and stigmas and ensure that consent is obtained by those best placed to do so, for example, a person’s own clinician, whereby there is already an established relationship.
- Who can access my data? Potential patient benefit, as well as risks and limitations of data use should be clearly demonstrated before access to data is granted, with key terms associated with the anonymisation process properly explained.
- Will third parties (such as pharmaceutical companies) have to pay to use my data for research? Some felt that there should be a charge for commercial companies to access data, particularly in light of concerns patients may have around security. It was felt that this may work to acknowledge patients’ role in R&I developments, however, some were concerned that it could also serve to create unnecessary barriers.
- How can researchers access my data? Clearly defined monitoring and governance process around access, with these being transparent and developed in consultation with the public. Requests for access should go through approved data panels which are inclusive of patient and public representatives, with clear expectations set around capacity for sharing data for individual patient benefit and emphasis on the wider societal impact.