Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2015, 28, 1–2
Editorial: Health Inequity: from Evidence to Action Christine Linehan*, Jenneken Naaldenberg†, Henny van Schrojenstein Lantman de Valk‡ and Hilde Tobi§ *Centre for Disability Studies, School of Psychology, University College Dublin, Dublin 4, Ireland; †Department of Primary and Community Care, Radboud University, Nijmegen, The Netherlands; ‡Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands; §Research Methodology Group, Wageningen University & Research, Wageningen, The Netherlands
Accepted for publication 23 September 2014
This JARID special issue follows from an IASSIDD Health SIRG meeting hosted in November 2013 in Nijmegen, the Netherlands entitled ‘Health Inequity: from evidence to action’. The conference sought to examine the evidence base of health inequities experienced by people with intellectual disabilities, which has grown exponentially in recent years, and explore what is needed to move towards improvements in the health status of people with intellectual disabilities. The issue is timely. After decades of deinstitutionalization, the aspiration of a healthy and satisfying life in the community has yet to be realized for many individuals with intellectual disability. The United Nation’s Convention on the Rights of People with Disabilities (United Nations 2006) affords individuals with disabilities the right to enjoy the highest attainable standard of health and ensures equal access to health services for those with and without disabilities. Despite these rights, a recent confidential inquiry into premature deaths of people with intellectual disability in England reported that the proportion of deaths among individuals with intellectual disabilities due to factors associated with poorer access to health care were markedly higher than those reported for the general population. Contributory factors to these deaths included problems with advanced care planning, failure to adjust supports to meet changing needs, lifestyle choices and delays in treating health problems (Heslop et al. 2013). The conference thus provided a timely opportunity for conference participants, who included self-advocates with intellectual disability, to consider issues of health inequity through keynote lectures, poster presentations and interactive workshops. The outcomes of the interactive workshops are reported in this special issue, as are full abstracts from the conference posters. Together with the four original research and opinion papers, this special issue brings together ideas from key researchers in the area of intellectual disabilities and health to form opinions, generate topics to explore, and point towards new areas to inform higher level policy making. © 2014 John Wiley & Sons Ltd
This special issue opens with a summary paper by Naaldenberg, Banks, Lennox, Ouellette-Kuntz, Meijer & van Schrojenstein Lantman-de Valk of the outputs from the conference workshops. By sharing positive experiences and best practices, participants identified strategies for action. These strategies included recognizing and harnessing the untapped resource of various stakeholders, providing educational opportunities for healthcare workers regarding health issues of people with disabilities, and increasing policy makers and other stakeholders awareness of health inequity. The importance of policy making, and specifically the provision of statistical information in developing health policy for people with disabilities, is the focus of Glover’s opinion paper. A personal reflection, this paper presents examples of statistical data driving the campaign for policy, through policy formation, and onward to monitoring and evaluation. The path is uneven. Statistical data form a powerful argument in the rationale for policy development. Their use thereafter, in policy formation and monitoring, is considerably less robust. The possibilities exist to develop infrastructures that support the ongoing collection of data to inform policy implementation; in particular, sophisticated data linkage opportunities. Such an infrastructure is required to ensure that developments in health policy are not only based on sound evidence, but are subject to stringent ongoing monitoring. The theoretical paper by Tracy & McDonald follows with a clear call and rationale to improve medical and health professional education in order to raise awareness and address barriers in health care that contribute to inequities. Education of health professionals holds the potential to enhance the capacity of healthcare services to better meet the health needs of people with intellectual disabilities. Despite this potential, medical education in many jurisdictions has failed to systematically address the health needs of this population. Drawing on personal experience of the Australian medical system, Tracy & McDonald present an array of opportunities to enhance 10.1111/jar.12136
2 Journal of Applied Research in Intellectual Disabilities
education for medical and health professionals, including the involvement of people with intellectual disabilities as experts by experience. Enhancing the practice of healthcare professionals in primary health care is the subject of Lennox, van Driel and van Dooren’s paper. Primary health care is the first point of contact with the health system and is typically the gate keeper to secondary and tertiary health care. Despite this central role, persistent and contemporary challenges exist in the provision of primary care for people with intellectual disability. Updating a previous review of developments in primary care, this paper presents strategies aimed at supporting primary healthcare workers to provide optimal healthcare services to people with intellectual disabilities. These strategies form a much needed step towards improving health outcomes for this population. The final paper in this special edition is an original research paper by Ouellette-Kuntz, Cobigo, Balogh, Wilton and Lunsky. This research utilized existing linked administrative and social service data sources to document the uptake of secondary prevention among people with intellectual disabilities compared to the general population. Rates of uptake for a biennial health examination and screening for three cancers were lower than those reported for the general population. The findings reinforce the need for routinely available data to provide ongoing monitoring of practice against policy. In combination, these papers identify some powerful strategies that may address the current gap that exists between research, policy and practice regarding health status and access to health care for people with intellectual disabilities. Underlying these papers was the call ‘from evidence to action’. Ample evidence now exists of the marked health disparities experienced by people with disabilities. As the papers in this special
edition have highlighted, there is now a need for action – to harness untapped resources, focus on the implementation and ongoing monitoring of health policy, educate health professionals with the skills required to tackle inequality, address the challenges faced by those in primary care and utilize available data sources as tools to routinely monitor disparity. The final section of this special edition presents abstracts from a wide range of poster presentations which were showcased at the Nijmegen conference. These presentations reveal the breath of research activity currently ongoing in this field. As editors, we hope that these papers and abstracts advance the discourse on health inequity for people with intellectual disability. The evidence of health inequity is overwhelming. Now is the time to move from evidence to action and contribute to the realization of the United Nation’s Convention on the Rights of People with Disabilities (United Nations 2006).
Correspondence Any correspondence should be directed to Christine Linehan, University College Dublin, F209 Newman Building UCD Belfield, Dublin 4, Ireland (e-mail: [email protected]).
References Heslop P., Blair P. S., Fleming P. J., Hoghton M. A., Marriott A. M. & Russ L. S. (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD): Final Report. Norah Fry Research Centre, Bristol. United Nations (2006) Convention on the Rights of Persons with Disabilities. Available at: http://www.un.org/disabilities/ default.asp?id=150 (accessed on 6 October 2014).
© 2014 John Wiley & Sons Ltd, 28, 1–2
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of WileyBlackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Journal of Applied Research in Intellectual Disabilities 2015, 28, 1–2
Editorial: Health Inequity: from Evidence to Action Christine Linehan*, Jenneken Naaldenberg†, Henny van Schrojenstein Lantman de Valk‡ and Hilde Tobi§ *Centre for Disability Studies, School of Psychology, University College Dublin, Dublin 4, Ireland; †Department of Primary and Community Care, Radboud University, Nijmegen, The Netherlands; ‡Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands; §Research Methodology Group, Wageningen University & Research, Wageningen, The Netherlands
Accepted for publication 23 September 2014
This JARID special issue follows from an IASSIDD Health SIRG meeting hosted in November 2013 in Nijmegen, the Netherlands entitled ‘Health Inequity: from evidence to action’. The conference sought to examine the evidence base of health inequities experienced by people with intellectual disabilities, which has grown exponentially in recent years, and explore what is needed to move towards improvements in the health status of people with intellectual disabilities. The issue is timely. After decades of deinstitutionalization, the aspiration of a healthy and satisfying life in the community has yet to be realized for many individuals with intellectual disability. The United Nation’s Convention on the Rights of People with Disabilities (United Nations 2006) affords individuals with disabilities the right to enjoy the highest attainable standard of health and ensures equal access to health services for those with and without disabilities. Despite these rights, a recent confidential inquiry into premature deaths of people with intellectual disability in England reported that the proportion of deaths among individuals with intellectual disabilities due to factors associated with poorer access to health care were markedly higher than those reported for the general population. Contributory factors to these deaths included problems with advanced care planning, failure to adjust supports to meet changing needs, lifestyle choices and delays in treating health problems (Heslop et al. 2013). The conference thus provided a timely opportunity for conference participants, who included self-advocates with intellectual disability, to consider issues of health inequity through keynote lectures, poster presentations and interactive workshops. The outcomes of the interactive workshops are reported in this special issue, as are full abstracts from the conference posters. Together with the four original research and opinion papers, this special issue brings together ideas from key researchers in the area of intellectual disabilities and health to form opinions, generate topics to explore, and point towards new areas to inform higher level policy making. © 2014 John Wiley & Sons Ltd
This special issue opens with a summary paper by Naaldenberg, Banks, Lennox, Ouellette-Kuntz, Meijer & van Schrojenstein Lantman-de Valk of the outputs from the conference workshops. By sharing positive experiences and best practices, participants identified strategies for action. These strategies included recognizing and harnessing the untapped resource of various stakeholders, providing educational opportunities for healthcare workers regarding health issues of people with disabilities, and increasing policy makers and other stakeholders awareness of health inequity. The importance of policy making, and specifically the provision of statistical information in developing health policy for people with disabilities, is the focus of Glover’s opinion paper. A personal reflection, this paper presents examples of statistical data driving the campaign for policy, through policy formation, and onward to monitoring and evaluation. The path is uneven. Statistical data form a powerful argument in the rationale for policy development. Their use thereafter, in policy formation and monitoring, is considerably less robust. The possibilities exist to develop infrastructures that support the ongoing collection of data to inform policy implementation; in particular, sophisticated data linkage opportunities. Such an infrastructure is required to ensure that developments in health policy are not only based on sound evidence, but are subject to stringent ongoing monitoring. The theoretical paper by Tracy & McDonald follows with a clear call and rationale to improve medical and health professional education in order to raise awareness and address barriers in health care that contribute to inequities. Education of health professionals holds the potential to enhance the capacity of healthcare services to better meet the health needs of people with intellectual disabilities. Despite this potential, medical education in many jurisdictions has failed to systematically address the health needs of this population. Drawing on personal experience of the Australian medical system, Tracy & McDonald present an array of opportunities to enhance 10.1111/jar.12136
2 Journal of Applied Research in Intellectual Disabilities
education for medical and health professionals, including the involvement of people with intellectual disabilities as experts by experience. Enhancing the practice of healthcare professionals in primary health care is the subject of Lennox, van Driel and van Dooren’s paper. Primary health care is the first point of contact with the health system and is typically the gate keeper to secondary and tertiary health care. Despite this central role, persistent and contemporary challenges exist in the provision of primary care for people with intellectual disability. Updating a previous review of developments in primary care, this paper presents strategies aimed at supporting primary healthcare workers to provide optimal healthcare services to people with intellectual disabilities. These strategies form a much needed step towards improving health outcomes for this population. The final paper in this special edition is an original research paper by Ouellette-Kuntz, Cobigo, Balogh, Wilton and Lunsky. This research utilized existing linked administrative and social service data sources to document the uptake of secondary prevention among people with intellectual disabilities compared to the general population. Rates of uptake for a biennial health examination and screening for three cancers were lower than those reported for the general population. The findings reinforce the need for routinely available data to provide ongoing monitoring of practice against policy. In combination, these papers identify some powerful strategies that may address the current gap that exists between research, policy and practice regarding health status and access to health care for people with intellectual disabilities. Underlying these papers was the call ‘from evidence to action’. Ample evidence now exists of the marked health disparities experienced by people with disabilities. As the papers in this special
edition have highlighted, there is now a need for action – to harness untapped resources, focus on the implementation and ongoing monitoring of health policy, educate health professionals with the skills required to tackle inequality, address the challenges faced by those in primary care and utilize available data sources as tools to routinely monitor disparity. The final section of this special edition presents abstracts from a wide range of poster presentations which were showcased at the Nijmegen conference. These presentations reveal the breath of research activity currently ongoing in this field. As editors, we hope that these papers and abstracts advance the discourse on health inequity for people with intellectual disability. The evidence of health inequity is overwhelming. Now is the time to move from evidence to action and contribute to the realization of the United Nation’s Convention on the Rights of People with Disabilities (United Nations 2006).
Correspondence Any correspondence should be directed to Christine Linehan, University College Dublin, F209 Newman Building UCD Belfield, Dublin 4, Ireland (e-mail: [email protected]).
References Heslop P., Blair P. S., Fleming P. J., Hoghton M. A., Marriott A. M. & Russ L. S. (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD): Final Report. Norah Fry Research Centre, Bristol. United Nations (2006) Convention on the Rights of Persons with Disabilities. Available at: http://www.un.org/disabilities/ default.asp?id=150 (accessed on 6 October 2014).
© 2014 John Wiley & Sons Ltd, 28, 1–2
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of WileyBlackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
