Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi.

Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project.

Results: Our results indicated some of the successes and challenges encountered by our consortium.

Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.

The project was carried out from March 2009 until February 2013 with a particular focus on disability. People with disabilities were amongst its researchers, and organisations representing persons with disabilities were consulted. We also undertook extensive survey sampling of people with disabilities representing different cultures and contexts across 17 sites in the four project countries.

The crux of the consortium’s argument was that health care can neither be universal nor equitable if it is less accessible to some sections of society than to others. Figure 1 illustrates schematically how we operationalised this: people with disabilities are distinguished by various activity limitations (including physical, social and psychological barriers). The extent to which these barriers impede access to health care is influenced by local contextual and health systems variables, and by characteristics of the individuals and the communities in which they live.

FIGURE 1: Schematic summary of the theoretical model on which EquitAble was based.

Having identified and mutually agreed on partners who could work well together, we also sought to maximise the benefit of including the four African countries, where data collection was actually going to take place. Why these four countries? What was it about this combination of countries that added value over any other group of countries? After teasing out distinguishing contextual factors in each country we recognised that these four countries allowed us to explore access to health care systems in contexts where a large proportion of the population has been displaced (Sudan); where the population is highly dispersed (Namibia); where chronic poverty and high disease burden compete for meagre resources (Malawi); and where, despite relative wealth, universal and equitable access to healthcare is yet to be attained (South Africa) (see MacLachlan et al. 2012). We also sought to explore how activity limitations across the mentioned contexts interact with other factors that make people vulnerable to poor access to health care, such as age, gender, ethnicity and locality.

Figure 2 illustrates how we operationalised the management of the research programme into distinct WPs. The rationale, operational details and leadership for each of the WPs were discussed in detail and unanimously agreed upon. WPs 1 and 5 were led by Trinity College Dublin, WP2 by Ahfad University, WP3 by Stellenbosch University, and WP4 by SINTEF.

FIGURE 2: Schematic representation of the relationship between the five work packages in EquitAble

The management structure provided a sound basis for shared responsibility and participation by assigning responsibility for the different WPs to four different partners. All WPs were organised under one lead person and institution with counterparts in each of the four countries where the research was carried out. The lead person in each of these countries joined the respective WP teams and led the country team for the specific WP. Whilst intensive dialogue, including electronic, telephonic and face-to-face meetings aimed at establishing a ground for influence on the design in each WP, took place, the country teams also had sufficient flexibility to adapt to their own context and circumstances. The cost of such a flexible involvement approach may have been that some differences in research design and data collection were evident between the four project countries. However, the gain was assumed to be ownership, relevance and increased possibilities for utilisation of research results.

The publication protocols and rules for joint publications, both of the overall project and in the country teams, were discussed extensively and were agreed upon by the team members. The publication protocol was first drafted at a meeting in Sudan, with reference to the Sudanese-led WP, and was subsequently adopted for all publications of the project in a meeting in Norway.

The project was officially launched in Sudan in March 2009, following a year of financial and administrative negotiations with the European Commission. In addition to its commencement in Sudan, the consortium also held its annual and closing meetings in Sudan, and also held annual meetings in Norway, South Africa, and Zimbabwe. Members of an external advisory board attended some of these meetings with participation by members from all of the countries and the institutional partners.

Content areas that respondents considered partially fulfilled with room for improvement, included ‘the area of translation of the research evidence into practical feedback strategies’, and the ‘need to write papers that link the work packages of the study’. With regards to publications, many respondents felt that whilst publications from WP2, the policy WP, had been very satisfactory (see e.g. Amadhila et al. 2013; Amin et al. 2011; MacLachlan et al. 2012), there were too few arising from WP3, the qualitative WP (Braathen et al. 2013; Van Rooy et al. 2012). In relation to the publication protocol, one respondent indicated that its operationalisation was ‘unfair for researcher[s] at lower level [early career] in [their] country team’. Other issues on publication related to a lack of time to analyse data from WP4, the quantitative WP, within the funding period. It was suggested that separate funding be secured to promote publication from the latter WP in particular, and also for dissemination and training on use of the policy analysis framework, ‘EquiFrame’, developed as part of WP2.

A key feature of EquitAble research relates to the sourcing of locally available research resource persons, especially field research assistants (including persons with disabilities), and individualised training workshops to match the diverse talent pool (college graduates; diploma holders; school drop-outs) in each one of the project sites within the four countries.

Another widespread view on the nature and impact of the collaboration was summed up by one respondent who stated:

The EquitAble project is an excellent example of how the North and South should work. The process involved all stakeholders from development of the proposal to implementation and publications. In all countries ethical approval was obtained from relevant IRBs [Institutional Review Boards].

Collaboration amongst and between researchers from this South-North partnership was not without its complexities. The following statement provides a snapshot of some of the difficulties related to mutual respect and working relationships:

I think the critical issue here is how to handle/tackle issues that undermines each other’s dignity. Mixing North and South researchers offers us a window of opportunity to deal with some of these issue[s]/shortcomings of not handling each other appropriately.

Perception is that initially it was difficult to coordinate different voices that were relating to different needs and contextual issues – especially via e-mail without face-to-face discussions – this improved when the project team met as a whole group.

The publication protocol was highlighted in terms of an enabling process with one respondent indicating that:

Establishing the publication protocol through consensus was a real strength of the process. Also, country teams having direct access to both work package leaders and project coordinator[s] meant real time field challenges were addressed at once.

Respondents were however least satisfied with their experience in relation to research administration of the project, particularly liaising with the European Commission’s Seventh Framework Programme (FP7) Office. In this regard one respondent stated:

I think this has been a happy and productive project, with lots more yet to come from it. I don’t feel that the EC requirements are necessarily overly burdensome – I think we should be very accountable for the large sum of money entrusted to us – however, the continual moving of the ‘goalposts’ in terms of what is required by Brussels, is really problematic and frustrating for all, including, I am sure, Commission staff in Brussels.

Two distinct research administration challenges were highlighted. They were: ‘The constant change of project officer in Brussels is a challenge to maintain communications’, and ‘the constant change without automatic notification of the FP7 Participants Portal (on-line reporting mechanisms)’.

Some specific issues are worth highlighting. Given that large projects often end their funding period when much analyses, publication and dissemination remains to be carried out, one challenge will be to maintain motivation and coherence of activity between team members who may be working on new projects.

EquiFrame has already been used to write new, and revise existing, health policies in Sudan, Malawi and South Africa. We hope country teams will continue to monitor the impact of this framework on policy revision and development, and contribute to monitoring and evaluation of the real impact of policies. The impact of EquiFrame (Mannan et al. 2014) already reaches beyond Africa, with Handicap International translating it into French for use by civil society organisations internationally, and the United Nations Educational, Scientific and Cultural Organisation (UNESCO) organising a conference on its potential use in contributing to their social inclusion work in South-East Asia. Findings from EquiFrame have also been presented at leading regional and international fora such as the African Union Social Affairs ministerial summit in Khartoum (Dube et al. 2010), and the United Nations Commission for Social Development in New York (MacLachlan 2012).

Returning to our own capacity building within the research team, several participants undertook MSc or PhD degrees as part of the project and have indicated benefits from being part of a multi-country and multidisciplinary team. The project has thus presented students with the opportunity to participate in a large complex project and some of these students may go on to lead such projects in the future. Whilst most participants felt that the research protocol was a strength of the project, it having been agreed in open discussion in project meetings (Appendix 2), some suggested that this might be unfair to early career researchers. In particular, few of the early career researchers had experience of publishing prior to involvement in project EquitAble. Despite this, Namibia and South Africa facilitated early career researchers to publish as lead authors on multi-authored papers (Amadhila et al. 2013; Braathen et al. 2013), and it has been made clear that any individual can be the lead of a publication if they initiate it.

Indeed, one of the team’s greatest challenges is to do justice to the enormous amount of data collected in WP4, the quantitative WP, as yet unpublished in peer-reviewed journals. Whilst as per the contractual obligations to the European Commission, a summary of the analyses has been submitted, the team has a moral responsibility to ‘make public’ (peer-reviewed submissions) data that has been provided to the team by thousands of participants. Further funding support should be sought to facilitate detailed analyses for publishing in peer-review journals.

The EquitAble research project has achieved many of its objectives in terms of enabling vulnerable individuals’ voices and those of researchers themselves to be heard. The inclusion of representatives of the SADPD in the consortium and in the project team provided a good grounding for dialogue between researchers and civil society. Individuals’ voices from different communities and backgrounds were heard and communicated through the research team throughout data collection and dissemination. Although the project had a full year of research analyses and the writing up of this data following data collection comprised in the schedule, it was still not enough, and much of the data from the project still awaits analyses and publication. More time for analyses and write up should be funded and more members of the team should be encouraged to lead the write up of data for dissemination. Whilst writing workshops can empower less experienced researchers, the nature of their own contracts often means that they have insufficient time to give to the writing up of research, although many would like to do this, recognising that it would be advantageous for their own careers. The development of ‘research-writing mentors’, including outside the research team, could be one way of addressing this issue.

The quest to gain understanding and solutions on issues of equitable access to health services for vulnerable groups was the core aim that brought together the EquitAble project partners. It is this quest that kept the group bonded together and ensured sustainability of the project despite our differences.

The authors are aware that in commenting on our own team processes in this article, we are both the image and the reflection. Others may view our work differently. This article has attempted to be reflective in a structured way: a less structured approach may have highlighted different themes and allowed greater scope for individuals to express their distinct views. We hope that other perspectives may yet be forthcoming. If, in conducting social research, we are ‘to be the change we seek’, then this requires a variety of reflective methodologies, none of which can be expected to offer a complete image or to position itself in an impartial or neutral space. Nonetheless, we hope that the willingness of our own consortium to engage in this reflexive analysis will encourage other research teams to undertake similar ‘learning from doing’ assessments, and by doing this, help to identify good practices that would help research partnerships to achieve their aims.

Whilst recognising that a broad range of learning about project context, process and impact can be drawn from this particular project, we conclude by synthesising and highlighting 10 primary points of recommendation that have been noted by members of our consortium (further recommendations for future research nor capacity building are provided in Appendix 3):

• Engender and nurture a consciousness around establishing joint ownership and participation amongst all partners of a complex research project, and allow them to see how they are interdependent.
• Ensure to have proposal development meetings with all potential partners in attendance so that they feel that they are part of it from the start.
• Enable leadership opportunities for all participating consortium partner institutions so that each can lead on some aspects of the project.
• Establish agreement on a publication protocol and an effective implementation mechanism through clear and open discussion, and publish the protocol on the project website.
• Include disabled people’s organisations and related civil society organisations as active members of the research team, each with their own dedicated funding.
• Provide opportunities to develop consortium partners’ research and research administration skills to enable them to meet European Commission or other funding agency requirements.
• Accept that even with clear and unanimously agreed protocols, not everyone will abide by them and there is little to be gained by engendering conflict over these instances.
• Promote dissemination and influencing opportunities by including research-users at an early stage of the research: we used ‘consultation workshops’, gaining much insight and authenticating our consultative processes.
• Build funding for research-writing workshops and research-writing mentors into research proposals, targeted especially at less experienced researchers.
• Be well-prepared for project meetings, anticipate and try to address difficulties in private, be diplomatic in public and strive to retain the trust and respect of team members for each other.

Amin, M., MacLachlan, M., Mannan, H., El Tayeb, S., El Khatim, A., Swartz, L. et al., 2011, ‘EquiFrame: A framework for analysis of the inclusion of human rights and vulnerable groups in health policies’, Health and Human Rights 13(2), 82–101.

Braathen, S.H., Vergunst, R., Mji, G., Mannan, H. & Swartz, L., 2013, ‘Understanding the local context for the application of global mental health: A rural South African experience’, International Health 5(1), 38–42. http://dx.doi.org/10.1093/inthealth/ihs016

Brannen, J., 2005, ‘Mixing methods: The entry of qualitative and quantitative approaches into the research process’, International Journal of Social Research Methodology 8, 173–184. http://dx.doi.org/10.1080/13645570500154642

Dube, A.K., MacLachlan, M., Amin, M. & Mannan, H., 2010, ‘Equitable access to healthcare and persons with disabilities’, presentation at Khartoum, African Union Social Affairs Ministerial Summit, 21–23 November.

MacLachlan, M., 2012, ‘Community based rehabilitation and inclusive global health: A way forward’ statement to the United Nations Commission for Social Development, New York, 02 February.

MacLachlan, M., Amin, M., Mannan, H., El Tayeb, S., Bedri, N., Swartz, L. et al., 2012, ‘Inclusion and human rights in health policies: Comparative and benchmarking analysis of 51 policies from Malawi, Sudan, South Africa and Namibia’, PLoS ONE 7(5), e35864. http://dx.doi.org/10.1371/journal.pone.0035864

Mannan, H., Amin, M., Maclachlan, M. & EquitAble consortium, 2014, The EquiFrame manual: An analytical tool for evaluating and facilitating the inclusion of core concepts of human rights and vulnerable groups in policy documents, 2nd edn.,Global Health Press, Dublin.

Van Rooy, G., Amadhila, E.M., Mufune, P., Swartz, L., Mannan, H. & MacLachlan, M., 2012, ‘Perceived barriers to accessing health services among people with disabilities in rural Northern Namibia’, Disability & Society 27(6), 761–75. http://dx.doi.org/10.1080/09687599.2012.686877