Development and early-stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing - A patient-driven approach

Sep 24, 2026

Uploaded by Logic

Genetic testing for hereditary cancer syndromes improves outcomes through risk-mitigation, yet family communication is essential to reduce hereditary cancer burden. This study developed a patient portal to support patients undergoing HCS genetic testing, then conducted an early-phase evaluation. The portal was shaped using 25 semistructured interviews, with iterative feedback from patients and healthcare providers analyzed via descriptive statistics and qualitative synthesis to prioritize integration.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages11

Reading Time28 min

AccessFree to download

Abstract

Introduction

Methods

Results

Conclusions

DOI: 10.1111/hex.13702 ORI G INA L ART I CLE Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach Samantha Pollard PhD, Senior Methodologist1 | Deirdre Weymann MA, Senior Health Economist1 | Rosalie Loewen MA, Health Economist1 | Jennifer Nuk MSc, CGC, Genetic Counsellor2,3 | Sophie Sun MD, Medical Oncologist and Co‐Medical Director, Hereditary Cancer Program2,4,5 | Kasmintan A. Schrader MBBS, PhD, Medical Geneticist and Co‐Medical Director, Hereditary Cancer Program2,3,6 | Chiquita Hessels, Patient Partner7 | Dean A. Regier PhD, Senior Scientist1,8 1Cancer Control Research, BC Cancer, Vancouver, British Columbia, Canada 2Hereditary Cancer Program, BC Cancer, Vancouver, British Columbia, Canada 3Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada 4Division of Medical Oncology, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada 5Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada 6Department of Molecular Oncology, BC Cancer, Vancouver, British Columbia, Canada 7Li‐Fraumeni Syndrome Association Canada, Vancouver, British Columbia, Canada 8School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada Correspondence Samantha Pollard, PhD, Senior Methodologist, Cancer Control Research, BC Cancer, 604‐675‐8000 ext 7050, 601 West Broadway, Vancouver, BC V5Z 4C2, Canada. Email: [spollard@bccrc.ca](spollard@bccrc.ca) Abstract Introduction: Genetic testing for hereditary cancer syndromes (HCSs) can improve health outcomes through cancer risk mitigation strategies. Effective communication between tested individuals and their family members is key to reducing the hereditary cancer burden. Our objective was to develop a patient portal to improve familial communication for patients undergoing HCS genetic testing, followed by an early‐phase evaluation. Methods: The portal was developed following the completion of 25 semistructured interviews with individuals having undergone HCS susceptibility testing at BC Cancer. Following initial development, we recruited patients and healthcare providers to provide critical feedback informing portal refinement. Quantitative feedback was summarized using descriptive statistics, and qualitative feedback was synthesized by two reviewers who engaged in iterative discussion within the research team to prioritize recommendations for integration. Results: The patient portal includes four key components consisting of (a) targeted educational information about hereditary cancer and HBOC syndrome associated risks and testing process overview,(b) a general frequently asked questions ‘FAQ’page informed by the qualitative interviews, patient partner feedback, and consultation with the HCP,(c) guidance to support familial communication including a video developed with a patient partner describing their lived experience navigating the communication process and (d) a series of lay summaries of genetic test findings to support information transfer among family members. Thirteen healthcare providers and seven patients participated in user testing. Domains within which This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd. Funding information Genome Canada, Grant/Award Number: 271LYM; Canadian Institutes for Health Research, Grant/Award Number: PCG‐ 155555; Genome British Columbia and Genome Canada, Grant/Award Number: G05CHS participant recommendations were provided included presentation, educational content and process clarification. Conclusions: This investigation demons

FAQs

What problem does the patient portal aim to address for hereditary cancer testing?

It aims to improve communication between tested individuals and their family members, supporting better information transfer during hereditary cancer susceptibility testing.

How was the patient portal developed?

It was developed after completing 25 semistructured interviews with individuals who underwent HCS susceptibility testing at BC Cancer.

What key components does the patient portal include?

It includes targeted educational information, a general FAQ page, guidance for familial communication supported by a patient-partner video, and lay summaries of genetic test findings to support sharing among family members.

Sep 24, 2026

Uploaded by Logic