Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies

Rios, Dianne; Magasi, Susan; Novak, Catherine; Harniss, Mark

doi:10.2105/ajph.2016.303448

Cited by 114 publications

(116 citation statements)

References 33 publications

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“…More generally, as one participant added regarding barriers to participation: "It may be difficult to get access to the information required, or to save records required because equipment is inaccessible." Because disability-accessible data are often limited or unavailable in many healthcare and research settings [44,45], participants' relatively low interest in receiving results may reflect previous negative experiences with inaccessible healthcare systems.…”

Section: Discussionmentioning

confidence: 99%

“…Similar rationales may explain why our participants expressed far less interest than the general public in receiving "information about other research studies related to health" (34 vs. 60% [3]). People with disabilities are often excluded from clinical trials and other mainstream health research for reasons that include using comorbidities, including disability [45], as exclusion criteria [46], inaccessible study materials [44], and concerns about obtaining consent, e.g., from people with intellectual disabilities [47]. As one participant stated, "they (i.e., PM researchers) will not want to include people with disabilities," even as the survey's description of a proposed PMR study stated that the cohort will "include men and women of all ages from many places and backgrounds in the United States."…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

Sabatello¹,

Zhang²,

Chen³

et al. 2020

Public Health Genomics

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KeywordsDisability · Precision medicine research · Return of results · Medicalization · Marginalization Abstract Purpose: Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, especially among people from historically marginalized communities who are commonly underrepresented in research. However, research participants' interest in receiving nongenomic medical and nonmedical results that may emerge from precision medicine research (PMR) is understudied and no study to date has explored the views of people with disabilities about return of genomic and nongenomic results from PMR. Methods: In a national online survey of people with disabilities, participants were queried about their interest in receiving biological, environmental, and lifestyle results from PMR (n = 1,294). Analyses describe findings for all of the participants and comparisons for key demographic characteristics and disability subgroups. Re-sults: The participants expressed high interest in biological and health-related results and less interest in other findings. However, the interest among the study participants was lower than that found in comparable studies of the general population. Moreover, this interest varied significantly across gender, race/ethnicity, and disability subgroups. Possible reasons for these differences are discussed. Conclusion: Insofar as return of results from PMR may impact translational efforts, it is important to better understand the role of sociomedical marginalization in decisions about return of results from PMR and to develop strategies to address existing barriers.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

Sabatello¹,

Zhang²,

Chen³

et al. 2020

Public Health Genomics

View full text Add to dashboard Cite

show abstract

“…Leeds Beckett University provided ethical approval for the work. Given the potential vulnerability of adults with HFASD in research, additional effort was made to ensure an accessible research design (Rios et al 2016 ). Potential participants were given an accessible written information sheet explaining the purpose of the project and their potential role.…”

Section: Methodsologymentioning

confidence: 99%

Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK

Southby

Robinson

2017

J Autism Dev Disord

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‘Low-level’ support is championed to support adults with high functioning autism spectrum disorder (HFASD) to achieve good quality health and social care, yet research in the area is sparse. Drawing on semi-structured interview data, this paper considers the efficacy of an intervention to provide low-level support to adults with HFASD with little or no funded support. The intervention led to a number of perceived positive outcomes for adults with HFASD, their families, and service providers in the city, including increased access to education, volunteering, support and information, socialising, improved health and wellbeing, and managing day-to-day. Although many of life’s difficulties still persisted, the intervention helped service users overcome barriers to availing further support, possibly leading to beneficial outcomes down the line.

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“…Indeed, several reports indicate that older adults are often under-represented in health research and various methods for enhancing their involvement, recruitment and retention are suggested [34][35][36][37][38][39][40]. Moreover, despite having a higher incidence of chronic conditions and health-related disparities, people with disabilities are mostly absent from mainstream health research because of overly rigid exclusion criteria and lack of consideration for proper accessibility and accommodation in research design [41].…”

Section: Discussionmentioning

confidence: 99%

“…Several recommendations may be useful to minimize the barriers to research involving people with visual impairment such as engaging with proxy respondents (e.g. carers) and being adequately resourced with time and money to make use of alternative formats for providing information and to recruit participants [41][42][43][44][45]52]. Telephone interviews may be useful to increase flexibility and provide a more comfortable setting for participants [45].…”

Section: Discussionmentioning

confidence: 99%

A systematic review of pharmacists’ interventions to support medicines optimisation in patients with visual impairment

et al. 2019

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Background People with visual impairment often report poorer health and encounter many challenges when using medicines. Pharmacists can play a significant role in optimising medicines use for these patients. However, little is known about pharmacists’ current practices when providing services to this population nor the impact of such services, if any, on medicines optimisation-related outcomes. Aim of the review This systematic review aims to identify the types, and assess the effectiveness of, interventions provided by pharmacists on medicines optimisation-related outcomes. Method Systematic searches of the following electronic databases were carried out from date of inception to March 2018: Cochrane Library; MEDLINE; EMBASE; International Pharmaceutical Abstracts; Scopus; and Cumulative Index to Nursing and Allied Health Literature. Several trial registries and grey literature resources were also searched. Any randomised controlled trials, non-randomised controlled trials, controlled before-and-after studies, or interrupted time series analyses reporting on interventions provided by pharmacists to adult visually impaired patients and/or their caregivers in order to improve medicines optimisation-related outcomes of medicine safety, adherence, patient satisfaction, shared decision making, or quality of life were included. Results A total of 1877 titles/abstracts were screened, and 27 full text articles were assessed for eligibility. On examination of full texts, no studies met the inclusion criteria for this review. Conclusion This review highlights the need for future research that would be vital for promoting the safe and effective use of medicines and the delivery of pharmaceutical care services to people with visual impairment.

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Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies

Cited by 114 publications

References 33 publications

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK

A systematic review of pharmacists’ interventions to support medicines optimisation in patients with visual impairment

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