Evidence map›Paper›PMID 37083496›Full record

ArticleJMIR formative research2023

Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW).

Dorothee Speiser, Maren Heibges, Laura Besch, Caren Hilger, Marie Keinert, Katharina Klein, Gudrun Rauwolf, Christine Schmid, Sven Schulz-Niethammer, Steffi Stegen and 5 more

Abstract read
In one paragraph

Article in JMIR formative research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Review
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

15 authors.

Dorothee Speiser *Department of Gynecology with Breast Center, Hereditary Breast and Ovarian Cancer Center, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-6447-629X
Maren Heibges *Division of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0003-0393-9374
Laura BeschDepartment of Gynecology with Breast Center, Hereditary Breast and Ovarian Cancer Center, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-6744-9457
Caren HilgerGender in Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-5809-0286
Marie KeinertDepartment of Clinical Psychology and Psychotherapy, Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen-Nuernberg, Germany.ORCID https://orcid.org/0000-0002-7427-3058
Katharina KleinGender in Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0003-2045-6884
Gudrun RauwolfDivision of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0001-6631-3075
Christine SchmidDivision of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-6936-4828
Sven Schulz-NiethammerDivision of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-2723-1998
Steffi StegenBRCA-Netzwerk e.V., Hilfe bei familiären Krebserkrankungen, Bonn, Germany.ORCID https://orcid.org/0000-0002-6038-4654
Viola WestfalDivision of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-1856-4846
Isabell WitzelDepartment of Gynecology, Hereditary Breast and Ovarian Cancer Center, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.ORCID https://orcid.org/0000-0002-8734-4521
Benedikt ZangDepartment of Gynecology with Breast Center, Hereditary Breast and Ovarian Cancer Center, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0001-9951-149X
Friederike Kendel *Gender in Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-3726-0338
Markus A Feufel *Division of Ergonomics, Department of Psychology and Ergonomics, Technische Universität Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0003-0563-8831

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

iKNOW is the first evidence-based digital tool to support personalized counseling for women in Germany with a hereditary cancer risk. The counseling tool is designed for carriers of pathogenic gBRCA (germline breast cancer gene) variants that increase the lifetime risk of breast and ovarian cancer. Carriers of pathogenic variants are confronted with complex, individualized risk information, and physicians must be able to convey this information in a comprehensible way to enable preference-sensitive health decisions. In this paper, we elaborate on the clinical, regulatory, and practical premises of personalized counseling in Germany. By operationalizing these premises, we formulate 5 design principles that, we suggest, are specific enough to develop a digital tool (eg, iKNOW), yet wide-ranging enough to inform the development of counseling tools for personalized medicine more generally: (1) digital counseling tools should implement the current standard of care (eg, based on guidelines); (2) digital counseling tools should help to both standardize and personalize the counseling process (eg, by enabling the preference-sensitive selection of counseling contents from a common information base); (3) digital counseling tools should make complex information easy to access both cognitively (eg, by using evidenced-based risk communication formats) and technically (eg, by means of responsive design for various devices); (4) digital counseling tools should respect the counselee's data privacy rights (eg, through strict pseudonymization and opt-in consent); and (5) digital counseling tools should be systematically and iteratively evaluated with the users in mind (eg, using formative prototype testing to ensure a user-centric design and a summative multicenter, randomized controlled trial). On the basis of these paradigmatic design principles, we hope that iKNOW can serve as a blueprint for the development of more digital innovations to support personalized counseling approaches in cancer medicine.

Indexed as

BRCAbreast cancercancer riskdigital healthgenetic counselinghereditary breast and ovarian cancerhereditary canceronline counseling toolovarian cancerrisk communicationuser-centered design principles

Identifiers

PMID37083496
PMCPMC10163406

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

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.