The Genomics Conversation: What matters to patients
The GEP recently met with patients and their relatives to talk about their experiences of genomic testing and the key insights they want healthcare professionals to know
In May, the GEP met with a group of patients and family members with personal experiences of cancer and rare disease, in a session organised by NHS England and NHS Improvement’s Strategic Coproduction Group for Personalised Care. We spoke to them about what’s most important for healthcare professionals to know when it comes to genomic testing as part of their care.
Initial consultation
Among the participants, not everyone was acquainted with the word genomics. As for many healthcare professionals, genetics was the more familiar term. For some, however, even genetics can seem intimidating or concerning. Thinking about the consultation where genomic or genetic testing might first be discussed, the group’s key points of advice to healthcare professionals were:
- Avoid technical words – use plain English.
- Provide an opportunity to raise questions – both during the consultation and afterwards.
- It’s okay to not have all the answers – be honest if you don’t know (and follow up when you do know).
- Signpost to information for the patient to read and absorb after the appointment.
- Clinical interventions can evolve over time and it’s important to explain why an approach has changed – for example, a new test becoming available where before there was none.
Family history
The patients and family members in the group were aware that cancer and rare disease can have a genetic component. Some worried about conflicting information they had been told about whether a relative’s cancer could have a genetic basis. Others had concerns about the impact of genomic testing on the rest of their family. The group’s key points of advice for healthcare professionals were:
- Be open to considering genetics as a factor in a patient’s ill-health.
- If the patient is worried about a family history of disease, and the healthcare professional has judged that genetic inheritance isn’t at play, explaining the reasons why can help resolve any doubts.
- Discovering that a patient’s condition could be inherited can raise many worries and questions, so clear, open communication is important.
- Consider the potential impact on the patient’s family and support the patient in communicating with relatives about genomic testing where appropriate.
The testing process
The group discussed the testing process and the many questions that can arise. They recognised that genomic testing is different from many other tests a patient may have, and how complex the decision-making can be. Their key points of advice included:
- Be clear about what the outcomes of the test could be, and the possible benefits for the patient.
- Where appropriate, refer patients and family members for genetic counselling where a genetic basis is identified.
- It is worth exploring with a patient who initially rejects genomic testing to see what their objections are. It may be based on a worry or concern that can be addressed.
- Sometimes there is no test or treatment available, which can be hard to hear – so please be sensitive.
The results
Finally, the group talked about their experiences receiving genomic test results and the challenges around that. Sensitivity and clarity were particularly valued. Their key points of advice for healthcare professionals were:
- Encourage patients to bring someone with them to the results appointment – they can be a valuable support when a patient is too overwhelmed to absorb all the information.
- While speaking sensitively is appreciated, it’s also important to be clear. For example, avoiding using the word “cancer” in a results conversation can lead to confusion and misunderstanding.
- Sharing a genetic diagnosis with family members can be complex and difficult for patients, and advice and support may be needed.
- Family members will often have questions too, about what the patient’s results might mean for them, and facilitating those questions can be hugely helpful.
- Before the end of the consultation, make sure the patient has a clear understanding of what has been discussed.
In summary, the session was incredibly insightful and thought-provoking and, we hope, provided some helpful points for any healthcare professional to consider when talking about genomic testing to their patients and family members.
The GEP would like to extend our huge thanks to the individuals who gave their time to participate in the group discussion, and to NHS England and NHS Improvement’s Strategic Coproduction Group for Personalised Care for facilitating the conversation.
For more information and resources on ‘talking genomics’, please follow the #GenomicsConversation hashtag on social media as part of our annual week of action.
–
