Training activity information
Details
Provide information regarding genetic testing options and elicit the individual’s preference for testing in independent consultations
Type
Entrustable training activity (ETA)
Evidence requirements
Evidence the activity has been undertaken by the trainee repeatedly, consistently, and effectively over time, in a range of situations. This may include occasions where the trainee has not successfully achieved the outcome of the activity themselves. For example, because it was not appropriate to undertake the task in the circumstances or the trainees recognised their own limitations and sought help or advice to ensure the activity reached an appropriate conclusion.
Reflection at multiple timepoints on the trainee learning journey for this activity.
Considerations
- Options available e.g. risk management, genetic testing and reproductive options
- Alternative options and the legitimacy
- The benefits and cons risks of the alternatives, taking account of patients’ concerns and personal circumstances
- Uncertainties associated with available options
- Assessing the individual’s understanding decisions
- Eliciting individual preferences for risk management options
- Eliciting patient preferences for reproductive options
- Eliciting patient preferences for predictive/pre-symptomatic genetic testing
- Informed consent
- Genetic tests available for different genetic conditions and clinical situations
- Procedure to order genetic tests
- The effect of genetic test results on patient care and the care pathway for different genetic conditions
- Implications for family members
- Risk, benefits and limitation of interventions
- Population and new-born screening programmes
Reflective practice guidance
The guidance below is provided to support reflection at different time points, providing you with questions to aid you to reflect for this training activity. They are provided for guidance and should not be considered as a mandatory checklist. Trainees should not be expected to provide answers to each of the guidance questions listed.
Before action
What does success look like?
- Identify what information is needed to ensure the individual has a clear understanding of the genetic testing options discussed.
- Consider how the learning outcomes apply, specifically in relation to effectively eliciting and understanding the individual’s preference for testing, respecting their autonomy.
- Discuss with your training officer to gain clarity of what is expected of you in relation to the necessary components of a balanced presentation of testing options and the documentation of patient preference.
What is your prior experience of this activity?
- Think about what you already know about explaining complex medical information, specifically about genetic tests, to patients.
- Consider possible challenges you might face during the activity, such as trying to understand a patient’s decision-making process or preferences, especially if they are complex or conflicting.
- Recognise the scope of your own practice for this activity i.e. know when you will need to seek advice or help, and from whom. You will need to seek advice from your Training Officer when required, for example if the patient expresses strong resistance to testing due to deep-seated cultural or religious beliefs, or if there is ambiguity regarding their capacity to make an informed choice.
- Acknowledge how you feel about providing information and supporting a patient to express their preference for testing in an independent setting.
What do you anticipate you will learn from the experience?
- Consider the specific skills you want to develop, such as specific communication strategies to use or improve upon when discussing testing options and preferences, drawing upon previous experiences of the activity.
- Identify the specific insights you hope to gain into supporting patient autonomy in the decision-making process for genetic testing.
What additional considerations do you need to make?
- Consider yourConsider your previous experiences of explaining testing options or shared decision-making.
- Identify important information you need to establish before embarking on the activity, such as specific resources, screening information, and potential cultural or personal beliefs that might influence a patient’s view on genetic testing.
- Consider how the patient’s own life and family history might influence their feelings about testing.
In action
Is anything unexpected occurring?
- Are you noticing anything surprising or different from what you anticipate whilst actively providing information about testing options or eliciting preferences?
- Are you encountering situations such as:
- The individual reveals strong prior knowledge or deeply held misconceptions about a specific testing option (e.g., NGS vs single-gene testing) you didn’t expect?
- The patient expresses an unyielding preference for a specific, non-indicated test?
- The patient signals that they feel under pressure to make a specific choice?
How are you reacting to the unexpected development?
- How is this impacting your actions? For example, are you adapting your approach to explore the patient’s underlying beliefs or concerns?
- Consider the steps you are taking in the moment, such as adjusting your explanation to address misconceptions, or using social stories to demonstrate the different choices available.
- How are you feeling in that moment? For instance, are you finding it difficult to provide balanced information while navigating a patient’s strong pre-existing views?
What is the conclusion or outcome?
- Identify how you are working within your scope of practice. For example, were you able to provide balanced information and facilitate the patient’s choice? Or are you needing support because the request for a non-indicated test requires clarification on scope of practice regarding ordering restrictions?
- What are you learning as a result of the unexpected development? For example, are you learning in the moment about managing pre-existing misconceptions or delivering non-directive care?
On action
What happened?
- Begin by summarising the key steps you took when explaining genetic testing options and exploring the individual’s preference.
- Consider specific events, actions, or interactions which felt important, such as the individual expressing an unyielding preference for a specific, non-indicated test or revealing strong prior knowledge/misconceptions about testing.
- Include any ‘reflect-in-action’ moments where you had to adapt to the situation as it unfolded, for instance, adapting your communication to address misconceptions or focus on emotional drivers.
- How did you feel during this experience, e.g., did you feel confident in supporting patient autonomy but challenged by providing balanced information while navigating their strong pre-existing preference?
How has this experience contributed to your developing practice?
- Identify what learning you can take from this experience regarding informed consent. What strengths did you demonstrate, e.g., clear and impartial communication of complex information about testing options?
- What skills and/or knowledge gaps were evident, e.g., difficulty managing a patient’s unyielding preference for a non-indicated test?
- Compare this experience against previous engagement with similar activities, has your practice improved in supporting patient decision-making?
- Identify any challenges you experienced, such as needing to seek advice or clarification on denying a patient a requested test that is not clinically indicated, and how you reacted to this.
What will you take from the experience moving forward?
- Identify the actions or ‘next steps’ you will now take to support the assimilation of what you have learnt, including from any feedback you have received, with regards to refining explanations of genetic testing options.
- What will you do differently next time you approach this element of practice?
- Do you need to practise any aspect of the activity further, such as explaining the implications of the testing process? Or, helping a patient weigh up their own preferences and needs with those of their family or partner.
Beyond action
Have you revisited the experiences?
- How have your subsequent experiences of explaining testing options since completing this specific training activity led you to revisit your initial approach or decisions during that activity? For example, perhaps a subsequent case involving variant reclassification, or additional findings, prompted you to re-evaluate the depth of your explanation of test implications, compared to your first attempt at this training activity.
- Considering what you understand about listening skills, non-directive support, and testing options now, how have you since adapted your facilitation of testing preferences?
- Has discussing cases involving patients with unyielding preferences or strong misconceptions with colleagues, peers, or supervisors changed how you now view your initial experience in this training activity? For example, hearing a senior colleague talk about a patient who misunderstood the limitations of testing may have refined your understanding of the critical nature of clarity, pacing, and tailoring information.
How have these experiences impacted upon current practice?
- How has the learning from this initial training activity, in combination with subsequent experiences, contributed to your overall confidence in supporting patients through discussions about testing?
- Looking holistically at your training journey, how has this initial testing information experience, revisited with your current perspective, contributed to your development in meeting the learning outcomes related to communication, decision-making, and counselling skills? For example, how this foundational experience has supported your development in linking preparation to subsequent communication of complex results.
Relevant learning outcomes
| # | Outcome |
|---|---|
| # 1 |
Outcome
Lead on establishing the patient agenda and psychosocial needs in complex genetic and genomic counselling consultations, under the supervision of a GCRB registered Genetic Counsellor. |
| # 2 |
Outcome
Employ counselling skills to facilitate complex decision making during genetic and genomic counselling consultations. |