Summer Consultation 2023

Summer Consultation 2023

From 12th– 13th July, our Sounding board met via Zoom for their Summer Consultation and to support in the induction of the 2023 cohort

Day One

On the first day, our new cohort for 2023 were introduced to existing members of the Sounding Board and taken through some of the basics of genomics and the GPW programme, including our communications approach and future plans.

Day Two

What was discussed?

New members took part in their first consultation alongside the existing Sounding Board cohort, and were consulted on the following topics: 

  • Input to the research project to evaluate the impact of bacterial secondary infections and antimicrobial resistance on Intensive Care during the SARS-CoV-2 pandemic
  • Educating medical students in the importance of genomics
  • A review of the consent form and patient information to allow the storage and use of genomic data and samples obtained as part of patient care for research.

Consultation 1: Research to evaluate the impact of bacterial secondary infections and antimicrobial resistance on Intensive Care during the SARS-CoV-2 pandemic

Session lead: Mandy Wootton (Cardiff University)

The Sounding Board were grouped into four breakout groups and asked a set of questions, for which their answers are summarised below:

  1. Have you heard of antimicrobial resistance before?
    • Most of you had heard of antimicrobial resistance in some form, with some members sharing personal experiences.

    • Members felt that more public information on the topic would help allay some of the fear misunderstanding and resultant anxiety from media coverage, particularly where there are more health risks involved.
 
  1. What are the drivers for antimicrobial resistance in bacteria?
    • Over-prescribing and misuse – which allows more opportunity for bacteria to mutate. Members queried the early cessation of treatment due to side effects and whether this could also facilitate mutation as well as the sharing of medication with friends and relatives.
    • It was noted that there would appear to be a higher rate of infection in healthcare environments which you felt would appear to explain a reluctance by some clinicians, in your experience, to use antibiotics straight away.
  •  
  1. What do people understand about secondary bacterial infections?
    • These are more common in more vulnerable patients with compromised      immune systems who are more likely to be routinely prescribed antibiotics

    • Little information is provided to patients at the point of prescribing about the risks of this, with some who have experienced secondary infections feeling that they were then left without the proper information at the time.
    • One issue driving antimicrobial resistance could be around doctors prescribing antibiotic and anti-viral drugs simultaneously
    • Members identified a need for greater focus on patient-led care, to reduce instances of prescribing antibiotics/other drugs for relatively minor ailments
 
  1. What is the impact to patients and family members when you are told you have an antimicrobial (antibiotic) resistant bacterial infection?

    • Infections can induce fear, confusion and panic, with individuals feeling uninformed about why they’ve been prescribed a certain antibiotic or the alternative options available.
    • On a positive note , members felt that the experience of antimicrobial resistance would help to increase awareness and understanding amongst wider family members
 
  1. What information would be sought by patients and family members when infection is caused by antimicrobial resistant bacteria (e.g. longer stay in hospital, other treatment options)
    • Will the infection come back, can it spread to other people and if so, how?
    • How will the infection be treated and what are the associated risks?
    • What is a bacterial infection?
    • What is its impact on me and/or my care?

Consultation 2: Educating medical students in the importance of genomics

Session lead: Devon Ward (Cardiff University)

We were joined by Devon Ward who spoke with members about what medical students should know to improve their understanding of genomics.

Members made the following comments:

  • It is not feasible for a doctor to learn about all genetic conditions but there should be easily accessible resources available for them to seek out more information, with appropriate contact details included.
  • We could replicate international frameworks that already exist e.g. genomics is
  • already well integrated into the Australian junior doctors’ curriculum from day one and make use of existing suite of resources, such as those developed with NHSE last year, or genomics training modules hosted by HEIW
  • Health professionals should be encouraged from an early stage to learn from patients
  • Who have lived experience of complex or underlying conditions and they could also learn from fellow students who have experience these also.
  • Ensure that any myths and/or common misconceptions are addressed as part of training
  • Link with wider engagement events, such as the Young People’s Genomics Cafés which form a baseline audience of 16-25 year olds. May be useful to use the genomics podcast to promote/encourage more junior doctors to come along to these to learn more
  • You felt that it is generally easier to reach healthcare professionals earlier in their training than to engage with the existing workforce which presents its own challenges.
  • We also need to make better use of the Alumni Network of this Board, as this group has the scope to broaden our reach into a wider variety of the community.

 

Consultation 3: A review of the consent form and patient information to allow the storage and use of genomic data and samples obtained as part of patient care for research.

Session lead: Rhys Vaughan (GPW Consent Manager, Wales Gene Park)

Our last consultation of the day was around consent for research, specifically looking at the consent form being developed and the relevant patient information leaflets.

The following key points were discussed:

On consent:

  • Accountability is key to any trusted research environment, with appropriate documentation in place before retaining an individual’s data and all data sets anonymised with no identifiable information included.
  • There needs to be flexibility around who will be gathering the consent; ideally this should be someone within the genetics department who can facilitate access as and when needed.
  • Researchers are enthusiastic about the proposed new way of gathering data which links other clinical information with genomic data, however, any risks need to be addressed.
  • There was some concern around the wholesale endorsement of genomic sampling at birth, as the individual would not be in a position to consent at this point.
  • Continuous feedback and engagement sessions with patients are needed to ensure their consent is truly informed
  • Consider how machine learning could be used to develop some patient data on specific health conditions

 

On Patient Information leaflets: 

  • Adequate training is required, especially for patients who may be involved in relevant committees, to ensure effective involvement.
  • It is important to state the scope of a given research project from the outset, including outlining its clinical significance.
  • It is vital to consider how we engage with different groups of people from diverse backgrounds via this information.
  • Public representation on advisory and access boards who will act as patient advocates representing the patient voice is key and can be fed into the production of content for patients.