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Africa Analysis: Get serious about research feedback
  • Africa Analysis: Get serious about research feedback

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  • Africa's role as a destination for health research could be at risk

  • Research results and benefits are often not shared with participants

  • Funders must ensure that projects have clear dissemination plans

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Africas often disease-ridden poor communities are a popular destination for health research. The number of clinical trials on the continent has grown, as has health service-related research and it shows no sign of slowing.

The increase in activity has had some interesting consequences, such as increasing competition for patients to participate in research. For instance, scientists in Durban, South Africa, jostle over patient cohorts to test new treatments for drug-resistant tuberculosis, which is rife in the area.

Keeping on good terms with these communities is essential for health research in Africa but the relationship is not easily managed.

Souring relationship

Indeed, the relationship has started to go sour in several places. As the number of clinical trials goes up, communities can grow cold to the scientists wooing them.

This is not just because of the increase in studies, which of course does play a part, but is also due to communities realising that their participation in these studies is valuable and that their compensation is inadequate.

The issue of compensation is important. For the participants, there is a cost associated with taking part in clinical trials. Transport to and from the trial site costs money. Participants may have to take time off work or neglect household duties.

There is often some small compensation for participants. But participating patients quickly realise that this is paltry compared with what the researchers get in return. These studies can make scientists careers or might result in money-spinning new treatments.

This inequality in the apparent return from research might be mitigated if the results and benefits from the research were shared with the communities. But they often arent.

Challenges in practice

Global ethical research guidelines underline the importance of feeding back the findings of health research involving developing country communities.

But this restitution rarely works well in practice. The challenges are well illustrated in a recent case study published online by three Canada-based health researchers: Anne-Marie Turcotte-Tremblay, Federica Fregonese and Nazmul Alam, from Montreal University.

In their article published online last month (5 July), the three describe the plight of John, a young Canadian health researcher, who conducted an epidemiological study on the developmental effects of malaria on children in a West African country. [1]

At the outset, John intended to share his findings with the community. The consent form, signed by participating families, spelled out this promise, and his grant included funding to publish the results in an open-access journal.

However, it ended up taking two years from the study being carried out to the research being published a long time for participants to wait for the results.

In addition, the research paper appeared in a prestigious, subscriptions-only journal rather than an open-access one. The reason for this was twofold: first, John found that the US$3,000 earmarked to pay for the open-access journal publication had been spent on other things.

Second, it was better for Johns career to publish in a high-profile, proprietary journal, as it would show him off in a better light to his academic colleagues.

Trying to make amends

John tried to make amends. Barred by copyright law from sharing the research article, he organised a dissemination workshop in the country where hed done the research. He also arranged for a press release to be issued.

However, participation in the workshop was scanty, and key officials left halfway through, seemingly only interested in the per-diem payment given to participants at that point.

And, to John, the articles that came out of the press release were disappointing. One headline screamed: Malaria drugs make our children dumb a misleading interpretation of the findings that could deter participants from taking part in future research projects.

Johns story is not unique. The case studys authors were swamped by emails from researchers recognising his plight. And the problem is not limited to small projects: it happens in multibillion dollar health research projects too.

Planning for dissemination

So what can be done about it? For starters, there needs to be a stronger push from research funders, and a greater willingness by researchers, to get findings back to the research participants in a timely and effective manner.

One radical solution is for scientific journals to request proof of dissemination to participating communities before publishing public health studies. This would require a rethink of the whole business of academic publishing in health research which may not be a bad thing.

But a more-realistic solution, backed by the authors of Johns case study, is for the funders of the research and the ethics committees that approve the projects to start taking a stronger role in ensuring that projects have clear dissemination plans, and that they are executed accordingly.

Whichever method is chosen, the incentives to researchers are clear: if they want to keep doing what they are doing in Africa and they should, given the great health challenges that research can help solve on the continent they have to get serious about feeding back their findings to the source.

Linda Nording

Journalist Linda Nordling, based in Cape Town, South Africa, specialises in African science policy, education and development. She was the founding editor of Research Africa and writes for SciDev.Net, Nature and others.

This article has been produced by SciDev.Nets Sub-Saharan Africa desk.

References

[1] Turcotte-Tremblay, A-M. et al Ethical Considerations of Dissemination and Restitution of Findings in Global Health Research (Bioéthique Online, 5 July 2013
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