Research participants: critical friends, agents for change

Ward, Jillian; Middleton, Rebecca; McCormick, David A.; White, Helen; Garcia, Ismael Kherroubi; Simmonds, Shelley; Chandramouli, Latha; Hart, A.

doi:10.1038/s41431-022-01199-3

Cited by 11 publications

(3 citation statements)

References 5 publications

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“…It covers pre‐clinical activity as well as the clinical interaction, reflecting clinicians' experience in returning genomic test results (Wynn et al., 2018). In addition, this framework, like others developed by the GEP (Pichini & Bishop, 2022), actively sought the views from rare disease communities, to ensure the patient experience is reflected in the framework which will lead to more effective clinician/patient interactions (Hastings Ward et al., 2022).…”

Section: Discussionmentioning

confidence: 99%

A cross‐professional competency framework for communicating genomic results

Pichini,

Tatton‐Brown,

Thomas

et al. 2023

Journal of Genetic Counseling

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To ensure genomic medicine is delivered safely and effectively, it is crucial that healthcare professionals are able to understand and communicate genomic results. This Education Innovation describes a nationally agreed, cross‐professional competency framework outlining the knowledge, skills and behaviors required to communicate genomic results. Using principles of the nominal group technique, consensus meetings with clinical, scientific and educational experts identified six stages in the return of results process, drafted and iterated competencies. Competencies were then mapped across three levels to acknowledge different degrees of experiences and scopes of practice. The framework was open for consultation with healthcare professionals and patient communities before being published. The finalized framework includes six core competency statements required to communicate genomic results. This framework is designed to be a guide for best practice and a developmental tool to support individuals and organizations. It can be used by healthcare professionals, such as genetic counselors, to identify individual learning needs or to structure the development of training for other healthcare professionals who are increasingly involved in requesting and returning results for genomic tests.

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Section: Discussionmentioning

confidence: 99%

A cross‐professional competency framework for communicating genomic results

Pichini,

Tatton‐Brown,

Thomas

et al. 2023

Journal of Genetic Counseling

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“…A successful patient workshop 32 was used as a guide. Guidelines were followed 31,33,34 to go beyond involvement to build trust, collaboration, quality and impact by sharing power and work towards a shared goal of improving patient care and experience 35 . The patient panel members all expressed this goal before joining the panel.…”

Section: Methodsmentioning

confidence: 99%

‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

Kohut,

Morton,

Hurley

et al. 2023

Health Expectations

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IntroductionPatient decision aids (PtDA) complement shared decision‐making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision‐making.MethodsShort presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small‐group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis.ResultsThe overarching theme was: It's personal. Contextual factors important for decision‐making were varied and changed over time. There was no one ‘best fit’ theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback.ConclusionMeaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision‐making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care.Patient ContributionPatients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi‐structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.

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“…Although they may develop into 'experts' with experience on patient panels and committees, they continue to represent the wider community and advocate for increased equity, diversion and inclusion of views. 30…”

Section: Co-design With Patients and Other Expertsmentioning

confidence: 99%

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC)

Kohut,

Speight,

Young

et al. 2023

J Med Genet

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BackgroundTesting for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation.MethodsRepresentatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions.ResultsMeeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients.ConclusionsRecommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.

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Research participants: critical friends, agents for change

Cited by 11 publications

References 5 publications

A cross‐professional competency framework for communicating genomic results

A cross‐professional competency framework for communicating genomic results

‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC)

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