Evidence map›Paper›PMID 31742563›Full record

ArticleJMIR research protocols2019

Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study.

Shane O'Donnell, Dana Lewis, María Marchante Fernández, Mandy Wäldchen, Bryan Cleal, Timothy Skinner, Klemens Raile, Adrian Tappe, Tebbe Ubben, Ingrid Willaing and 3 more

Open access · goldAbstract read
In one paragraph

Article in JMIR research protocols, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.

0numbers the graph read from it
0cells of the map it votes in
19citing papers in PubMed
3.8field-weighted citation impact, top 6% of its field
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

19 citing papers in PubMed, 41 citations in OpenAlex.

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  19. Open Access as a Revolution: Knowledge Alters Power.Journal of medical Internet research · 2019
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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

13 authors at 4 institutions in 3 countries.

Shane O'DonnellSchool of Sociology, University College Dublin, Belfield, Ireland.ORCID https://orcid.org/0000-0002-3778-705X
Dana LewisOpenAPS, Seattle, WA, United States.ORCID https://orcid.org/0000-0003-4063-4350
María Marchante FernándezSchool of Sociology, University College Dublin, Belfield, Ireland.ORCID https://orcid.org/0000-0003-3973-7803
Mandy WäldchenSchool of Sociology, University College Dublin, Belfield, Ireland.ORCID https://orcid.org/0000-0003-0404-517X
Bryan ClealDiabetes Management Research, Steno Diabetes Center Copenhagen, Gentofte, Denmark.ORCID https://orcid.org/0000-0003-3065-7364
Timothy SkinnerDiabetes Management Research, Steno Diabetes Center Copenhagen, Gentofte, Denmark.ORCID https://orcid.org/0000-0002-0018-6963
Klemens RaileDepartment of Paediatric Endocrinology and Diabetes, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0002-0842-1737
Adrian TappeAndroidAPS, Vienna, Austria.ORCID https://orcid.org/0000-0001-8501-7247
Tebbe UbbenAndroidAPS, Vienna, Austria.ORCID https://orcid.org/0000-0003-2573-2198
Ingrid WillaingDiabetes Management Research, Steno Diabetes Center Copenhagen, Gentofte, Denmark.ORCID https://orcid.org/0000-0002-3082-8816
Bastian Hauck#dedoc° Diabetes Online Community, Berlin, Germany.ORCID https://orcid.org/0000-0001-9374-8971
Saskia Wolf#dedoc° Diabetes Online Community, Berlin, Germany.ORCID https://orcid.org/0000-0002-9348-7545
Katarina BrauneDepartment of Paediatric Endocrinology and Diabetes, Charité - Universitätsmedizin Berlin, Berlin, Germany.ORCID https://orcid.org/0000-0001-6590-245X
University College Dublin · IECharité - Universitätsmedizin Berlin · DESteno Diabetes Centers · DKUniversity of Copenhagen · DK

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundDigital innovations in health care have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end product. However, user-driven open-source initiatives in health care are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own "Do-It-Yourself Artificial Pancreas Systems" (DIYAPS).

objectiveThe overall aim of this study is to establish the empirical evidence base for the clinical effectiveness and quality-of-life benefits of DIYAPS and identify the challenges and possible solutions to enable their wider diffusion.

methodsA research program comprising 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used to examine clinical and self-reported outcome measures of DIYAPS users. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users, making Outcomes of Patients' Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology (OPEN) a unique, user-driven research project.

resultsThis project has received funding from the European Commission's Horizon 2020 Research and Innovation Program, under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange. Researchers with both academic and nonacademic backgrounds have been recruited to formulate research questions, drive the research process, and disseminate ongoing findings back to the DIYAPS community and other stakeholders.

conclusionsThe OPEN project is unique in that it is a truly patient- and user-led research project, which brings together an international, interdisciplinary, and intersectoral research group, comprising health care professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus, it directly addresses the core research and user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry, and the patient community can create patient-centric innovation and reduce disease burden together. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/15368.

Indexed as

automated insulin delivery systemsclosed-loop insulin delivery systemsdiabetesdigital healthopen source#WeAreNotWaiting

Identifiers

PMID31742563
PMCPMC6891827
OpenAlexW2982569277

What Socratic 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 Socratic graph.