Developing voice and empowerment: the first step towards a broad consultation in research agenda setting

Abstract

The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

The power of difference in inclusive research

“…Overall, these empirical studies show that there are possibilities for people with intellectual disabilities to be actively involved in research and the positive impact of this involvement and empowerment for people with intellectual disabilities themselves (Abma, Nierse, and Widdershoven 2009;Bigby and Frawley 2010;Garcia Iriarte et al 2009;Nierse and Abma 2011;Williams 2005). Some studies even argue that it is possible for people with intellectual disabilities to be fully in control of the research process (Williams 1999(Williams , 2005.…”

“…By bringing in experiential knowledge, people with intellectual disabilities bring new insights (Abma, Nierse, and Widdershoven 2009;Nierse and Abma 2011;Tuffrey-Wijne and Butler 2010). The voice and experiential knowledge of people with intellectual disabilities enrich the professional perspective, and the involvement helps to gain entry and access to the broader community and advocacy organisations.…”

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

“…Due to the strict deadline set by the Minister of Health, time and resources were limited. Based on previous experiences with public and patient involvement in research agenda setting and interactive policy making, a participatory approach was developed based on the Dialogue Model [25][26][27][28]36,38,42,46,48], comprising four phases: (1) exploration, (2) consultation and prioritisation, (3) integration, and (4) follow-up.…”

“…The research agendas should be established using a participatory methodology whereby a broad consultation of lay patients had taken place. This resulted in the inclusion of six disease domains: burns [36], diabetes [37], kidney diseases [38,39], respiratory diseases [27,28,40], intellectual disabilities [41][42][43], and neuromuscular diseases [44]. The agendas were set up using the Dialogue Model, a model for patient participation in setting a research agenda, which is developed in the Netherlands.…”

Hacia la formulación de una Agenda de Investigación en Discapacidad para Colombia

“…Dicha opción es coherente con lo planteado por diversos autores [19][20][21][22], quienes llaman la atención sobre la necesidad de definir las agendas de investigación en iscapacidad desde enfoques teórico comprensivos que incorporen conceptos socioculturales, económicos y políticos como determinantes de la situación, para no restringir el alcance de todo el articulado únicamente a las clásicas prioridades definidas por las ciencias biomédicas o por los indicadores convencionales de la salud pública. De igual modo, coincide en la necesidad de trabajar este tipo de ejercicio desde enfoques metodológicos que garanticen la participación activa de todos los actores involucrados, principalmente, que la voz de las personas con discapacidad sea protagonista [23][24][25].…”