Evidence map›Paper›PMID 40234953›Full record

ArticleBMC research notes2025

Case study on challenges in research with public partners: A personal data incident during recruitment for a survey study on ageing and housing.

Magnus Zingmark, Susanne Iwarsson

Abstract read
In one paragraph

Article in BMC research notes, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

2 authors.

Magnus ZingmarkDepartment of Health Sciences, Lund University, BMC House E, Box 117, Lund, SE-221 00, Sweden. magnus.zingmark@umu.se.
Susanne IwarssonDepartment of Health Sciences, Lund University, BMC House E, Box 117, Lund, SE-221 00, Sweden.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo highlight experiences from a personal data incident, which occurred during recruitment for a project focused on how housing choices and relocation are related to active and healthy ageing.

resultsBased on established collaboration, the researchers and representatives of housing companies planned for recruitment. Invitations to participate was distributed to persons registered with an interest in relocation. The invitation letter included information according to ethical requirements and a link to an online survey. Within a few days, the housing company was contacted by a person who had received the invitation stating that the company had not secured individual consent to the disclosure of personal data to the researchers. The company and the researchers initiated a range of immediate actions to manage the situation, including a plan for how to respond to persons who wanted their person data to be deleted, how to handle already collected data, and for the continued implementation of the recruitment process. We acknowledge that despite established collaboration based on long term commitment from all parties involved, ethical issues require constant attention. Whereas our case represents a hard-learned lesson on a sensitive ethical issue, the well-established collaboration was of paramount importance for how the situation was handled.

Indexed as

AgingHousingPatient SelectionAgedHumansSurveys and QuestionnairesCo-designEuropean general data protection regulation (GDPR)Participatory designTransdisciplinary researchUser involvement

Identifiers

PMID40234953
PMCPMC12001627

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.