Q&A: Why we need a standard for fair partnerships

Research infrastructure isn't just about buildings and equipment. It's also about policy frameworks, legislation and generally creating a conducive environment for research — what Carel IJsselmuiden calls “the soft side of how to get science going”.

IJsselmuiden is director of COHRED, a Geneva-based international NGO that focuses on supporting low- and middle-income countries to improve their research capacity. As part of that, COHRED has set up the Research Fairness Initiative (RFI): a mechanism designed to ‘strongly encourage’ institutions to report the policies and practices they follow to ensure fairness in the collaborative research they undertake.

SciDev.Net spoke with IJsselmuiden about the mechanism and its aims after a discussion among RFI supporters in Brussels last month.
 
There we also spoke with Glaudina Loots, Director of Health Innovation at the South African Department of Science and Technology, in an audio interview that discusses some of the practical dimensions of implementing this tool. 
 

Dr. IJsselmuiden, what is the research fairness initiative?

 
The research fairness initiative is an attempt to create a first reporting format that would allow institutions that take part in global collaborative research — whether health or otherwise — to specify how they deal in key issues with those partnerships. These might be overhead costs, or sharing of intellectual property rights or decision making on how to modify studies.
 

We've been having a global consultation over a year and a half and we came up with this RFI that defines three areas of fairness. One is fairness of opportunity — more or less what happens before research starts. The second is fairness of process — relationship issues during research. And the third is fairness of benefit-cost and outcome sharing — the results at the end of research. For each we've defined five practical topics that have come up in all workshops, and then three indicators in each of those.

So an RFI report would be an annual or biannual report that institutions produce that outlines how they deal with partnerships. The purpose is to create transparency, to enable institutions to actually say what they are doing and where they want to improve — that is the reporting part. Secondly, it is to start picking up what others are doing in terms of capacity building, system infrastructure, benefits that they leave behind — so it is also a learning platform.
 

The RFI has also been referred to as an index. Can you clarify the difference between initiative and index?

 
It is subtle but very important. The initiative started off as a COHRED fairness index. The underlying part of an index is that you have criteria that you can measure, and by which you say the measure is right or wrong. That presumes you actually know what is right.
 
Now let me give you an example. Overhead costs are one of the most important areas of building sustainable research infrastructure, and also the most contentious. But the cost to build an institution, or to build telecommunications, varies tremendously. Some donors allow zero per cent. Others do [fund overheads], like the European Union now allows 25%, and the NIH (US National Institutes of Health) will allow 60-67% or more on top of the grant. So the question is what is right — is 0% right, is 30% right? We don't know. Part of moving from an index to an initiative is to say, let's at least start reporting what is common practice, and then maybe in a few years' time some of those criteria may become more like an index.
 

I noticed the initiative has a large number of indicators, I think about 45? This could be a deterrent for reporting, especially at a time when countries are implementing the SDGs. Is that something you're concerned about?

 

1. The three areas of fairness

1. Fairness of opportunity or what happens before research starts

2. Fairness of process or relationship issues during research

3. Fairness of benefit-cost and outcome sharing or the results

The answer is yes. In the various global consultations people bring that message across regularly. Particularly the pharmaceutical industry mentions an example like the Access to Medicines index, which puts a tremendous reporting load and administrative load. We've also heard this from non-profit organisations and donors. So the cost-benefit ratio needs to be important.
 
Having said that, many of those indicators are actually indicators of good management practice. And that gives a different perspective. If, for example, one of the indicators asks ‘does your institution have a research management office’, you can say yes — surely any self-respecting research institution that wants to receive external funding needs to have a research management office. So for you to document what you have and then to specify where you want to go in the next two years should be a normal management practice. So yes, we are concerned to reduce the load as much as possible. The message is that RFI is not a new externally imported reporting standard on top of SDGs and on top of whatever else is required — actually it is a report that you should be writing as an internal report for your own management and performance improvement.
 

Is that kind of reporting not being done currently as part of the donor funding process?

 
If you look at the literature that describes how research happens in collaboration — particularly between high- and low-income countries — there is a tremendous amount of literature of imbalance in financial means, in power of decision making, in access to the products and the intellectual property (IP) rights. There are endless amounts of articles on how people were robbed off their IP, how data and specimens are forced to leave a country. We all say 'that is bad', and there are people who take it very seriously, but there is no framework within which you can grow to understand what would be an appropriate or fair standard. So that's one thing the RFI wants to do. The second thing is that based on those experiences there are very committed people and institutions that have developed internal standards. But that is often not communicated. The RFI helps to increase compliance with those guidelines and those tools that do exist. I think that is one of the big virtues.
 

There was some scepticism at yesterday’s conference as to the mandatory nature of the tool. Have you had any reflections on that?

 
We need to get our message right. RFI is a voluntary, self-reporting system – there's nothing mandatory about it. If I tell you, however, that if you could choose between two institutions — one that produces conscientiously an RFI report and reflects on how it wants to do business in partnership, and another that doesn't — the choice is inevitably going to be for those who actually produce a report. So if your report says ‘our ethics system isn't quite working’, that is not a sign of weakness, it is a sign of where extra support could increase the capability. So no it's not mandatory. The remark that is important is that it has to be applied by a sufficient number of people to work. I also want to put the word scepticism in place: I think the big message from yesterday's meeting was, 'we all want it'. The question is no longer whether or not [to take it forward], but how.

There were also calls by the EU representatives for some more clarity and focus. How do you plan to take this on board in your next steps?
 
I think the logical next step is to pilot this in a series of institutions, and to write reports. So that we can see how it practically functions within government departments or within research institutions and the private sector. And to keep having workshops like this. I expect that what we now call a Beta version will be tweaked, not substantially changed, and that this version can run for 2-4 years perhaps. Then we will learn as people write it and use it. And so I would imagine that in 50 years' time, with thousands of users, it would be a different tool than what we have today.
 

Do you have a vision for those 50 years? Yesterday you mentioned the evidence-based system of medicine and you seemed to make a parallel between the two.

 
I'm really impressed, across the globe and across meetings, that there seems to be a wish for researchers to be part of a movement that creates more fairness and fairness of access to the benefits of research to the world. I think there is a sense — but there is no tool, there is no framework, there is no common standard. And for me the parallel that I drew was very much about when I started medical training: evidence-based medicine was very much in its infancy and most was expert driven — so one professor would say something totally opposite from the other, and sentences would always start with "in my experience". And that sentence, "in my experience", is what we see now in capacity building and research systems. In clinical medicine that sentence has been totally replaced by evidence-based medicine. And it is based on getting the data on the table. RFI is going to do that. In 20 years' time, the evidence base on how to build research infrastructure support into project granting will be way different from what it is now.
 
Q&As are edited for length and clarity.

This article is part of a series on the future of research funding in low and middle income countries supported by the International Development Research Centre.