Using the CRPD innovatively and connecting it to RE-AIM (seeChapter 3) as a decision aid/checklist illustrates how models and theories of disability can inform research about the effectiveness of public health interventions. Each of the five deliberation panels gave examples of how intervention research can be sensitised to accommodate different configurations of diversity within disability. They also gave examples of how terminology and measures needed to change, alongside the conduct of research, to ensure that the complexity and diversity of the disabling experience was captured. In many ways, the deliberation panels were reiterating many of the findings of this review and, in particular, the need for better research evidence. However, politically and socially active disabled people argued that this was not an immediate priority for them, as basic access to health care and public health had to be ensured first. They also expressed a suspicion of public health research, which was seen as aligned to a more medical model of disability and, in particular, the idea of rehabilitation. Most of their deliberation was subsumed into theoretical and political debates about tensions between equity and distribution of resources. Nonetheless, both professionals and participants espoused a holistic vision of public health,589but neither
group felt that this was being adhered to in policy or practice. Professionals, for example, noted tensions between ensuring public health prevention and promotion and taking a life-course approach. Participants in particular felt that there has been a‘narrowing’of the meaning of public health and that this has had consequences for how equity and social justice are understood. Furthermore, disabled participants felt that those responsible for public health research may not (yet) have the capabilities or resources to translate social involvement into the necessary political changes (see Beckfieldet al.590) and expressed
concerns about how disablism and racism may thwart these efforts. Disabled participants, when speaking about public health research, examined the more general distribution of resources and made implicit links to a second-class citizenship, noting not only the complex relation between deprivation, discrimination and disability but also that any enabling discourses, practices and even research evidence become marginalised by the status quo. They were especially critical of commissioning and of the ability to translate research evidence into policy and practice. Concerns were also expressed about inclusion, which was often seen as instrumental, predetermined by the researchers and tokenistic. Disabled participants would have preferred to see a more political engagement and one that was evident throughout the entire research process. Professionals struggled to connect the more theoretical debates about disability with the process of doing research, which was largely seen as a technical exercise. This was probably reflected in their concerns about the cost of inclusion rather than its political desirability. Professionals also struggled with issues of
intersectionality when discussing disability, which contrasted with how they viewed ethnicity and gender (see Kapilashramiet al.591). In this respect, professionals did not always see the links between theoretical and
empirical innovation and the potential importance of opening up public health research to more critical insights that reflect disabled people’s experiences. Professionals tended to describe a top-down bureaucratic approach to inclusion, often following national leads or prioritising the appointment of designated champions. Professionals did not show a great deal of familiarity about the social and political meaning of disability. Both professionals and disabled participants indicated a sense of powerlessness in changing current public health priorities, which they felt had become defined by economic cost instead of long-term investments in health. For this reason, they questioned the value of the decision aid, although disabled participants expressed some degree of attachment to it and could see its potential value. Professionals expressed particular concerns that it would become another evaluative exercise, to which no one would pay attention.
Conclusion
Our deliberation panels suggested that the use of any decision aid needs to be linked to a human rights-based approach. In this way, the decision aid will be inclusive. Discussions also suggested that the decision aid could be used to build capacity by ensuring greater participation. Disabled participants were especially keen to become coproducers rather than to engage with tokenistic consultation, disconnected from the political and social experiences of disability. Professionals, however, might take more convincing.