Evidence map›Paper›PMID 21998237›Full record

ArticleCanadian family physician Medecin de famille canadien2011

Ethics and privacy issues of a practice-based surveillance system: need for a national-level institutional research ethics board and consent standards.

Jyoti A Kotecha, Donna Manca, Anita Lambert-Lanning, Karim Keshavjee, Neil Drummond, Marshall Godwin, Michelle Greiver, Wayne Putnam, Marie-Thérèse Lussier, Richard Birtwhistle

Abstract readComparative StudyMulticenter Study
In one paragraph

Article in Canadian family physician Medecin de famille canadien, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing 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

17 citing papers in PubMed.

  1. Article
  2. Article
  3. Identifying cases of chronic pain using health administrative data: A validation study.Canadian journal of pain = Revue canadienne de la douleur · 2020
    Article
  4. A framework for value-creating learning health systems.Health research policy and systems · 2019
    Article
  5. Article
  6. Article
  7. Article
  8. Rebuttal: Do electronic medical records improve quality of care? No.Canadian family physician Medecin de famille canadien · 2015
    Article
  9. Article
  10. Article
  11. Article
  12. Practice recruitment.Canadian family physician Medecin de famille canadien · 2012
    Article
  13. Navigating REBs.Canadian family physician Medecin de famille canadien · 2012
    Article
  14. Respect for the subject paramount.Canadian family physician Medecin de famille canadien · 2012
    Article
  15. Ask not what your REB can do for you; ask what you can do for your REB.Canadian family physician Medecin de famille canadien · 2011
    Article
  16. Article
  17. Celebrating family medicine research.Canadian family physician Medecin de famille canadien · 2011
    Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

10 authors.

Jyoti A KotechaDepartment of Family Medicine, Queen's University, Kingston, ON, Canada. jyoti.kotecha@queensu.ca
Donna Manca
Anita Lambert-Lanning
Karim Keshavjee
Neil Drummond
Marshall Godwin
Michelle Greiver
Wayne Putnam
Marie-Thérèse Lussier
Richard Birtwhistle

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo describe the challenges the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) experienced with institutional research ethics boards (IREBs) when seeking approvals across jurisdictions and to provide recommendations for overcoming challenges of ethical review for multisite and multijurisdictional surveillance and research.

backgroundThe CPCSSN project collects and validates longitudinal primary care health information (relating to hypertension, diabetes, depression, chronic obstructive lung disease, and osteoarthritis) from electronic medical records across Canada. Privacy and data storage security policies and processes have been developed to protect participants' privacy and confidentiality, and IREB approval is obtained in each participating jurisdiction. Inconsistent interpretation and application of privacy and ethical issues by IREBs delays and impedes research programs that could better inform us about chronic disease.

resultsThe CPCSSN project's experience with gaining approval from IREBs highlights the difficulty of conducting pan-Canadian health surveillance and multicentre research. Inconsistent IREB approvals to waive explicit individual informed consent produced particular challenges for researchers.

conclusionThe CPCSSN experience highlights the need to develop a better process for researchers to obtain timely and consistent IREB approvals for multicentre surveillance and research. We suggest developing a specialized, national, centralized IREB responsible for approving multisite studies related to population health research.

Indexed as

Surveys and QuestionnairesBiomedical ResearchCanadaFamily PracticeHumansInformed ConsentPrimary Health CareProgram Development

Identifiers

PMID21998237
PMCPMC3192088

What OpenQuestion holds

Textmetadata
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.