A consensus statement on how to conduct inclusive health research

T. K. Frankena, J. Naaldenberg, M. Cardol, E. Garcia Iriarte, T. Buchner, K. Brooker, P. Embregts, E. Joosa, F. Crowther, A. Fudge Schormans, A. Schippers, J. Walmsley, P. O'Brien, C. Linehan, R. Northway, H. van Schrojenstein Lantman-de Valk, G. Leusink

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. Method: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. Results: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. Conclusions: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.
Original languageEnglish
Pages (from-to)1-11
Number of pages11
JournalJournal of Intellectual Disability Research
Volume63
Issue number1
Early online date2018
DOIs
Publication statusPublished - 1 Jan 2019

Cite this

Frankena, T. K., Naaldenberg, J., Cardol, M., Garcia Iriarte, E., Buchner, T., Brooker, K., ... Leusink, G. (2019). A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research, 63(1), 1-11. https://doi.org/10.1111/jir.12486
Frankena, T. K. ; Naaldenberg, J. ; Cardol, M. ; Garcia Iriarte, E. ; Buchner, T. ; Brooker, K. ; Embregts, P. ; Joosa, E. ; Crowther, F. ; Fudge Schormans, A. ; Schippers, A. ; Walmsley, J. ; O'Brien, P. ; Linehan, C. ; Northway, R. ; van Schrojenstein Lantman-de Valk, H. ; Leusink, G. / A consensus statement on how to conduct inclusive health research. In: Journal of Intellectual Disability Research. 2019 ; Vol. 63, No. 1. pp. 1-11.
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Frankena, TK, Naaldenberg, J, Cardol, M, Garcia Iriarte, E, Buchner, T, Brooker, K, Embregts, P, Joosa, E, Crowther, F, Fudge Schormans, A, Schippers, A, Walmsley, J, O'Brien, P, Linehan, C, Northway, R, van Schrojenstein Lantman-de Valk, H & Leusink, G 2019, 'A consensus statement on how to conduct inclusive health research' Journal of Intellectual Disability Research, vol. 63, no. 1, pp. 1-11. https://doi.org/10.1111/jir.12486

A consensus statement on how to conduct inclusive health research. / Frankena, T. K.; Naaldenberg, J.; Cardol, M.; Garcia Iriarte, E.; Buchner, T.; Brooker, K.; Embregts, P.; Joosa, E.; Crowther, F.; Fudge Schormans, A.; Schippers, A.; Walmsley, J.; O'Brien, P.; Linehan, C.; Northway, R.; van Schrojenstein Lantman-de Valk, H.; Leusink, G.

In: Journal of Intellectual Disability Research, Vol. 63, No. 1, 01.01.2019, p. 1-11.

Research output: Contribution to journalArticleAcademicpeer-review

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T1 - A consensus statement on how to conduct inclusive health research

AU - Frankena, T. K.

AU - Naaldenberg, J.

AU - Cardol, M.

AU - Garcia Iriarte, E.

AU - Buchner, T.

AU - Brooker, K.

AU - Embregts, P.

AU - Joosa, E.

AU - Crowther, F.

AU - Fudge Schormans, A.

AU - Schippers, A.

AU - Walmsley, J.

AU - O'Brien, P.

AU - Linehan, C.

AU - Northway, R.

AU - van Schrojenstein Lantman-de Valk, H.

AU - Leusink, G.

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Background: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. Method: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. Results: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. Conclusions: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

AB - Background: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. Method: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. Results: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. Conclusions: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

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Frankena TK, Naaldenberg J, Cardol M, Garcia Iriarte E, Buchner T, Brooker K et al. A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research. 2019 Jan 1;63(1):1-11. https://doi.org/10.1111/jir.12486