A consensus statement on how to conduct inclusive health research

Tessa Frankena; J. Naaldenberg; M. Cardol; E. Garcia Iriarte; T Buchner; K. Brooker; P. Embregts; E. Joosa; Felicity Crowther; A. Fudge Schormans; A. Schippers; Jan Walmsley; Patricia O'Brien; Christine Linehan; Ruth Northway; Henny van Schrojenstein Lantman-de Valk; G. Leusink

doi:10.1111/jir.12486

A consensus statement on how to conduct inclusive health research

Tessa Frankena, J. Naaldenberg, M. Cardol, E. Garcia Iriarte, T Buchner, K. Brooker, P. Embregts, E. Joosa, Felicity Crowther, A. Fudge Schormans, A. Schippers, Jan Walmsley, Patricia O'Brien, Christine Linehan, Ruth Northway, Henny van Schrojenstein Lantman-de Valk, G. Leusink

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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 round table discussion at the 2016 IASSIDD 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 language	English
Article number	12486
Number of pages	11
Journal	Journal of Intellectual Disability Research
Early online date	11 Apr 2018
DOIs	https://doi.org/10.1111/jir.12486
Publication status	E-pub ahead of print - 11 Apr 2018

Keywords

inclusive research
intellectual disabilities
health research
user involvment

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1111/jir.12486Licence: Unspecified

Consensus statement on inclusive health researchSubmitted manuscript, 53.2 KB
Box 1 - Key elements of reporting and publishingSubmitted manuscript, 15.3 KB
Box 2 - Future research directionsSubmitted manuscript, 15.1 KB
Headline statementsSubmitted manuscript, 11.3 KB
Appendix I - Easy read statementSubmitted manuscript, 4.44 MB

Cite this

Frankena, T., 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. (2018). A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research, Article 12486. Advance online publication. https://doi.org/10.1111/jir.12486

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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 round table discussion at the 2016 IASSIDD 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.",

keywords = "inclusive research, intellectual disabilities, health research, user involvment",

author = "Tessa Frankena and J. Naaldenberg and M. Cardol and {Garcia Iriarte}, E. and T Buchner and K. Brooker and P. Embregts and E. Joosa and Felicity Crowther and {Fudge Schormans}, A. and A. Schippers and Jan Walmsley and Patricia O'Brien and Christine Linehan and Ruth Northway and {van Schrojenstein Lantman-de Valk}, Henny and G. Leusink",

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Frankena, T, 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 2018, 'A consensus statement on how to conduct inclusive health research', Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12486

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AU - Frankena, Tessa

AU - Naaldenberg, J.

AU - Cardol, M.

AU - Garcia Iriarte, E.

AU - Buchner, T

AU - Brooker, K.

AU - Embregts, P.

AU - Joosa, E.

AU - Crowther, Felicity

AU - Fudge Schormans, A.

AU - Schippers, A.

AU - Walmsley, Jan

AU - O'Brien, Patricia

AU - Linehan, Christine

AU - Northway, Ruth

AU - van Schrojenstein Lantman-de Valk, Henny

AU - Leusink, G.

PY - 2018/4/11

Y1 - 2018/4/11

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 round table discussion at the 2016 IASSIDD 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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JO - Journal of Intellectual Disability Research

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A consensus statement on how to conduct inclusive health research

Abstract

Keywords

UN SDGs

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Cite this