Evidence map›Paper›PMID 38315514›Full record

ArticleJMIR research protocols2024

Blockchain-Based Dynamic Consent and its Applications for Patient-Centric Research and Health Information Sharing: Protocol for an Integrative Review.

Wendy M Charles, Mark B van der Waal, Joost Flach, Arno Bisschop, Raymond X van der Waal, Hadil Es-Sbai, Christopher J McLeod

Abstract read
In one paragraph

Article in JMIR research protocols, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
–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

6 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Integrating population-based biobanks: Catalyst for advances in precision health.Computational and structural biotechnology journal · 2024
    Article
  6. 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

7 authors.

Wendy M CharlesHealth Administration Program, Business School, University of Colorado, Denver, Denver, CO, United States.ORCID https://orcid.org/0000-0003-1627-6899
Mark B van der WaalTriall, Maarssen, Netherlands.ORCID https://orcid.org/0000-0001-7575-1309
Joost FlachTriall, Maarssen, Netherlands.ORCID https://orcid.org/0000-0002-4431-6096
Arno BisschopTriall, Maarssen, Netherlands.ORCID https://orcid.org/0000-0002-9814-6459
Raymond X van der WaalTriall, Maarssen, Netherlands.ORCID https://orcid.org/0000-0002-9795-9773
Hadil Es-SbaiTriall, Maarssen, Netherlands.ORCID https://orcid.org/0009-0003-1463-1532
Christopher J McLeodDepartment of Cardiovascular Medicine, Mayo Clinic, Jacksonville, FL, United States.ORCID https://orcid.org/0000-0001-6851-0152

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundBlockchain has been proposed as a critical technology to facilitate more patient-centric research and health information sharing. For instance, it can be applied to coordinate and document dynamic informed consent, a procedure that allows individuals to continuously review and renew their consent to the collection, use, or sharing of their private health information. Such has been suggested to facilitate ethical, compliant longitudinal research, and patient engagement. However, blockchain-based dynamic consent is a relatively new concept, and it is not yet clear how well the suggested implementations will work in practice. Efforts to critically evaluate implementations in health research contexts are limited.

objectiveThe objective of this protocol is to guide the identification and critical appraisal of implementations of blockchain-based dynamic consent in health research contexts, thereby facilitating the development of best practices for future research, innovation, and implementation.

methodsThe protocol describes methods for an integrative review to allow evaluation of a broad range of quantitative and qualitative research designs. The PRISMA-P (Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols) framework guided the review's structure and nature of reporting findings. We developed search strategies and syntax with the help of an academic librarian. Multiple databases were selected to identify pertinent academic literature (CINAHL, Embase, Ovid MEDLINE, PubMed, Scopus, and Web of Science) and gray literature (Electronic Theses Online Service, ProQuest Dissertations and Theses, Open Access Theses and Dissertations, and Google Scholar) for a comprehensive picture of the field's progress. Eligibility criteria were defined based on PROSPERO (International Prospective Register of Systematic Reviews) requirements and a criteria framework for technology readiness. A total of 2 reviewers will independently review and extract data, while a third reviewer will adjudicate discrepancies. Quality appraisal of articles and discussed implementations will proceed based on the validated Mixed Method Appraisal Tool, and themes will be identified through thematic data synthesis.

resultsLiterature searches were conducted, and after duplicates were removed, 492 articles were eligible for screening. Title and abstract screening allowed the removal of 312 articles, leaving 180 eligible articles for full-text review against inclusion criteria and confirming a sufficient body of literature for project feasibility. Results will synthesize the quality of evidence on blockchain-based dynamic consent for patient-centric research and health information sharing, covering effectiveness, efficiency, satisfaction, regulatory compliance, and methods of managing identity.

conclusionsThe review will provide a comprehensive picture of the progress of emerging blockchain-based dynamic consent technologies and the rigor with which implementations are approached. Resulting insights are expected to inform best practices for future research, innovation, and implementation to benefit patient-centric research and health information sharing.

trial registrationPROSPERO CRD42023396983; http://tinyurl.com/cn8a5x7t. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50339.

Indexed as

best practicesblockchainclinical trialdata reusedata sharingdynamic consenthealth care dataintegrative research reviewscientific rigortechnology implementation

Identifiers

PMID38315514
PMCPMC10877491

What OpenQuestion holds

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LicenceCC BY
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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.