Making BRCA1 genetic test reports easier to understand through user-centered design: A randomized trial

Recchia, Gabriel; Lawrence, Alice C E; Capacchione, Lauren; Freeman, Alexandra

doi:10.1016/j.gim.2022.04.016

Cited by 5 publications

(3 citation statements)

References 42 publications

(48 reference statements)

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“…Several studies recommend patients and families are directly involved in the design, to ascertain optimal report layout and content through co-design processes 6 , 10 – 13 . Although design approaches in commercial settings commonly involve co-design with target audiences, there remain few peer-reviewed studies detailing genomic test report co-design with non-specialist end-users 7 , 11 , 12 , 16 . Developing a completely revised patient/family-friendly report has been recommended, as a plain language resource provided alongside laboratory reports where appropriate 6 .…”

Section: Introductionmentioning

confidence: 99%

Co-design, implementation, and evaluation of plain language genomic test reports

et al. 2022

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Understanding and communicating genomic results can be challenging for families and health professionals without genetic specialty training. Unlike modifying existing laboratory reports, plain language genomic test reports provide an opportunity for patient/family-centered approaches. However, emerging examples generally lack co-design and/or evaluation in real-world settings. Through co-design involving patient groups, plain language experts, educators, and genetic health professionals, plain language genomic test report templates were produced for common test outcomes in rare diseases. Eight plain language genomic test report templates were developed. These reports were piloted and evaluated as part of a national pediatric ultra-rapid genomic testing program. Family and genetic health professional experiences with report layout, content, and use were explored using surveys. Of 154 families and 107 genetic health professionals issued with reports, 51 families and 57 clinicians responded (RR = 33% and 53%, respectively). Most families (82%) found their report helpful in understanding the result. Reports were shared by 63% of families, predominantly with family members (72%), or health professionals (68%). Clinicians (15%) adapted the reports for other settings. Through co-design, plain language genomic test reports implemented in a real-world setting can facilitate patient/family and caregiver understanding and communication of genomic test purpose, outcome, and potential clinical implications.

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Section: Introductionmentioning

confidence: 99%

Co-design, implementation, and evaluation of plain language genomic test reports

et al. 2022

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“…As health professionals with varying genetics knowledge and experience are increasingly ordering and/or interpreting genomic test outcomes, [2][3][4][5] plain language summaries may facilitate meaningful understanding and communication of results. [6][7][8][9][10][11][12] Understanding genomic test purpose, outcome, and potential clinical implications has the potential to enhance patient/family experiences, satisfaction, and engagement, which may lead to better health outcomes. Patients and their families have expressed a desire for plain language genomic test reports providing information consistent with clinical interpretations and recommendations available to health professionals, both for their own understanding and to communicate information with caregivers (e.g., physicians, allied health professionals, teachers, etc.).…”

Section: Introductionmentioning

confidence: 99%

“…6,10−12 Although design approaches in commercial settings commonly involve codesign with target audiences, there remain few peer-reviewed studies detailing genomic test report codesign with non-specialist end-users. 7,11,12,15 Developing a completely revised patient/family-friendly report has been recommended, as a plain language resource provided alongside laboratory reports where appropriate. 6 It has also been recommended co-design processes be utilized to develop plain language genomic test report templates containing key general information that can be personalized.…”

Section: Introductionmentioning

confidence: 99%

Co-design, implementation, and evaluation of plain language genomic test reports

Brett

Ward

Bouffler³

et al. 2022

Preprint

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Understanding and communicating genomic results can be challenging for families and health professionals without genetic specialty training. Unlike modifying existing laboratory reports, plain language genomic test reports provide opportunity for patient/family-centered approaches. However, emerging examples generally lack co-design and/or evaluation in real-world settings. Through co-design involving patient groups, plain language experts, educators, and genetic health professionals, plain language genomic test report templates were produced for common test outcomes in rare disease. These reports were implemented as part of a national pediatric ultra-rapid genomic testing program. Family and genetic health professional experiences with report layout, content, and use were explored using surveys. Eight plain language genomic test report templates were developed. Of 154 families and 107 genetic health professionals issued with reports, 51 families and 57 clinicians responded (RR = 33% and 53%, respectively). Most families (82%) found their report helpful in understanding the result. Reports were shared by 63% of families, predominantly with family members (72%), or health professionals (68%). Clinicians (15%) adapted the reports for other settings. Through co-design, plain language genomic test reports implemented in a real-world setting can facilitate patient/family and caregiver understanding and communication of genomic test purpose, outcome, and potential clinical implications.

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Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process

Donoso,

Carver,

Ficorella

et al. 2024

J Community Genet

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Background Multifactorial cancer risk prediction tools, such as CanRisk, are increasingly being incorporated into routine healthcare. Understanding risk information and communicating risk is challenging and healthcare professionals rely substantially on the outputs of risk prediction tools to communicate results. This work aimed to produce a new CanRisk report so users can directly access key information and communicate risk estimates effectively. Methods Over a 13-month period, we led an 8-step co-design process with patients, the public, and healthcare professionals. Steps comprised 1) think aloud testing of the original CanRisk report; 2) structured feedback on the original report; 3) literature review; 4) development of a new report prototype; 5) first round of structured feedback; 6) updating the new report prototype; 7) second round of structured feedback; and 8) finalising and publishing the new CanRisk report. Results We received 56 sets of feedback from 34 stakeholders. Overall, the original CanRisk report was not suitable for patients and the public. Building on the feedback, the new report has an overview of the information presented: section one summarises key information for individuals; sections two and three present information for healthcare professionals in different settings. New features also include explanatory text, definitions, graphs, keys and tables to support the interpretation of the information. Discussion This co-design experience shows the value of collaboration for the successful communication of complex health information. As a result, the new CanRisk report has the potential to better support shared decision-making processes about cancer risk management across clinical settings.

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Making BRCA1 genetic test reports easier to understand through user-centered design: A randomized trial

Cited by 5 publications

References 42 publications

Co-design, implementation, and evaluation of plain language genomic test reports

Co-design, implementation, and evaluation of plain language genomic test reports

Co-design, implementation, and evaluation of plain language genomic test reports

Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process

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