A consensus statement on how to conduct inclusive health research

T. Frankena*, J. Naaldenberg, M. Cardol, E.G. Iriarte, T. Buchner, K. Brooker, P.J.C.M. 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

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-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
JournalJournal of Intellectual and Developmental Disability
Volume63
Issue number1
DOIs
Publication statusPublished - 2019

Fingerprint

Consensus
health
disability
expert
roundtable discussion
Health Research
Developmental Disabilities
Disabled Persons
Intellectual Disability
quality of life
Delivery of Health Care

Keywords

  • DISABILITIES
  • INVOLVEMENT
  • PEOPLE
  • health research
  • inclusive research
  • intellectual disabilities
  • participation
  • user involvement

Cite this

Frankena, T., Naaldenberg, J., Cardol, M., Iriarte, E. G., Buchner, T., Brooker, K., ... Leusink, G. (2019). A consensus statement on how to conduct inclusive health research. Journal of Intellectual and Developmental Disability, 63(1), 1-11. https://doi.org/10.1111/jir.12486
Frankena, T. ; Naaldenberg, J. ; Cardol, M. ; Iriarte, E.G. ; Buchner, T. ; Brooker, K. ; Embregts, P.J.C.M. ; 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 and Developmental Disability. 2019 ; Vol. 63, No. 1. pp. 1-11.
@article{b851368d0f4048bf9986b57196e27c29,
title = "A consensus statement on how to conduct inclusive health research",
abstract = "BackgroundThe 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.MethodA 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.ResultsThis 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.ConclusionsConsensus 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 = "DISABILITIES, INVOLVEMENT, PEOPLE, health research, inclusive research, intellectual disabilities, participation, user involvement",
author = "T. Frankena and J. Naaldenberg and M. Cardol and E.G. Iriarte and T. Buchner and K. Brooker and P.J.C.M. Embregts and E. Joosa and F. Crowther and {Fudge Schormans}, A. and A. Schippers and J. Walmsley and P. O'Brien and C. Linehan and R. Northway and {van Schrojenstein Lantman-de Valk}, H. and G. Leusink",
year = "2019",
doi = "10.1111/jir.12486",
language = "English",
volume = "63",
pages = "1--11",
journal = "Journal of Intellectual and Developmental Disability",
issn = "1366-8250",
publisher = "Informa Healthcare",
number = "1",

}

Frankena, T, Naaldenberg, J, Cardol, M, Iriarte, EG, Buchner, T, Brooker, K, Embregts, PJCM, 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 and Developmental Disability, 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.; Naaldenberg, J.; Cardol, M.; Iriarte, E.G.; Buchner, T.; Brooker, K.; Embregts, P.J.C.M.; 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 and Developmental Disability, Vol. 63, No. 1, 2019, p. 1-11.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

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

AU - Frankena, T.

AU - Naaldenberg, J.

AU - Cardol, M.

AU - Iriarte, E.G.

AU - Buchner, T.

AU - Brooker, K.

AU - Embregts, P.J.C.M.

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

Y1 - 2019

N2 - BackgroundThe 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.MethodA 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.ResultsThis 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.ConclusionsConsensus 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 - BackgroundThe 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.MethodA 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.ResultsThis 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.ConclusionsConsensus 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.

KW - DISABILITIES

KW - INVOLVEMENT

KW - PEOPLE

KW - health research

KW - inclusive research

KW - intellectual disabilities

KW - participation

KW - user involvement

U2 - 10.1111/jir.12486

DO - 10.1111/jir.12486

M3 - Article

VL - 63

SP - 1

EP - 11

JO - Journal of Intellectual and Developmental Disability

JF - Journal of Intellectual and Developmental Disability

SN - 1366-8250

IS - 1

ER -