Evidence map›Paper›PMID 42557337›Full record

ArticleEuropean journal of human genetics : EJHG2026

Patients' and parents' views on how digital tools enable personalized and partnered care in genetics: a qualitative study.

Daniel Assamad, Saumeh Saeedi, Sonya Grewal, Vedika Jha, Stephanie Luca, Marc Clausen, Angela Shaw, Whiwon Lee, Yvonne Bombard, Robin Z Hayeems and 1 more

Abstract read
PubMed Publisher
In one paragraph

Article in European journal of human genetics : EJHG, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Daniel AssamadProgram in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada.
Saumeh SaeediGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.ORCID http://orcid.org/0000-0002-3674-7478
Sonya GrewalGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Vedika JhaGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.ORCID http://orcid.org/0000-0002-0201-1999
Stephanie LucaProgram in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada.ORCID http://orcid.org/0000-0002-1057-1013
Marc ClausenGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Angela ShawGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Whiwon LeeProgram in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada.ORCID http://orcid.org/0000-0002-4807-7782
Yvonne BombardGenomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.ORCID http://orcid.org/0000-0002-9516-4539
Robin Z HayeemsProgram in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada. robin.hayeems@sickkids.ca.ORCID http://orcid.org/0000-0003-3269-8004
Genetics Navigator Study Team

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient-facing digital tools in genetics can increase efficiency and personalize care, but may threaten patient-provider relationships due to a diminished sense of connection associated with traditional face-to-face encounters. To learn about experiences with and preferences for using digital tools in the delivery of genetic services, semi-structured interviews were conducted with patients or parents of children who had clinical or research genetic testing. Direct experience with a digital healthcare tool was not required for inclusion. Data were analyzed thematically. A total of thirty participants from across Canada were interviewed. Of these, 17 (57%) received genetic testing for themselves and 20 (67%) identified as female. Participants described previous positive experiences with digital tools in medical settings and welcomed the shift towards their increased use in genetics. Participants desired increased agency, access, and control while maintaining the human touch with their healthcare providers. They anticipated that supplementing care with a digital tool could provide the balance and personalization desired for digitally-enabled agency and better access to health information, including genetic test results. Digital tools can facilitate innovation in patient-centered care, enabling a personalized model of care that retains a sense of connection with healthcare providers.

Identifiers

PMID42557337

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.