For simplicity we present stakeholder's views regarding the benefits of global health research in three categories namely, benefits to those taking part in research including researchers and participating local institutions, benefits to the wider community in which research is located and lastly the societal benefits that are associated with successful completion of research.
Benefits to those taking part in research
The first category includes benefits mainly accruing to participants, researchers and the host institutions.
(i) Access to investigational products and care
"... I think there are several things that come at an individual level/.../during the time they are in the study you follow them up, you provide them with free medical care for the period they are in the study this one I would say it is a benefit... taking care of their medical care in our setting is something that most of us cannot afford especially in our rural areas" (Researcher 5).
Access to interventions that were being developed through research was generally regarded as an ideal form of benefit that should be provided to individuals directly participating in research. While the above response is mainly biased towards clinical research, it was apparent this view was held even where research involved non medical interventions like training.
Besides access to research interventions participants also expect to benefit from access to free or improved medical care more generally, especially through follow-up by clinicians. These were seen by some as key benefits for several reasons. First, the fact that most people participating in research cannot afford routine care, and second that care within a research context is of superior quality compared to the prevailing standard of care as illustrated by the quote from a respondent drawn from a public private partnership.
"... I think compared to normal treatment standards, patients have a better opportunity...they will see a Doctor more often, they will be followed up closer than if they come with Malaria to their local hospital and get the standard treatment". (Public private partnership2).
(ii) Compensation for time and effort
"... But you see, it is almost impossible to call somebody to walk from some place to come to the other place and you don't like give them something. So incentive is really something in African study or culture ... "(Researcher 1).
Compensation for time and effort for those participating in research was identified by several respondents, representing a cross section of stakeholders, as a form of benefit that should be made available. A related concern was the demand for reimbursement of direct costs incurred while participating in research. Those supporting compensation as a form of a benefit argued that incentives and rewards were critical for motivating participation
Other forms of benefit sharing among those participating in research were mainly seen as advantageous to local researchers and institutions.
(iii) Technology transfer
"... we cry for transfer of technology and as a way of addressing some of these, and that is what we normally insist on, to try to get some of our people as a Committee, before we approve a protocol, to be trained in these things...we try to look at it and say what is there in it for Kenya in terms of transfer of technology as a benefit for the country..." ( IRB member 4)
Some IRB members attached great significance to technology transfer because it was seen to be of great importance to the host country. Different examples of technology transfer including training and mentorship of local researchers by collaborating partners from the north were given as examples. Actual technologies were also mentioned including laboratory equipment and techniques for various types of research.
"...when you are mentored by somebody who knows how to do those particular things after sometimes you will be able to write your own proposal and also because for example you are writing this with/.../and he is respected, then they/.../might actually also respect it (the name of a local mentee)" (Researcher 4).
Opportunities for mentorship were deemed important in areas like publishing, definition of relevant research questions and the preparation of high quality research proposals capable of competing internationally for funding as illustrated by the following quote by a member of an IRB;
" ... They are starving for funds; they are starving for publications, they starving for name, and so they collaborate, come, and we'll do it" (IRB5).
(iv) Brain gain and retention of qualified personnel
"... he likes to talk about 'brain gain' as opposed to 'brain drain'. I mean the fact is, we are being able to provide interesting research work for lots of scientists.... but there are a lot of Doctors that are able to do what they want to do which is to stay in their own country and work in their own country" (Public private partnership1).
Several respondents also noted that global health research provides employment opportunities for local scientists. The quote by public private partnership 1 uses the metaphor of brain gain to illustrate how global health research contributes to retention of qualified people who might otherwise be lost to developed countries in the absence of local opportunities. The value of retaining qualified personnel locally was articulated in terms of their contribution to the local health care systems.
(v) Infrastructural development
"... Some of the equipments here are extremely old and some of the ones that have been bought recently are mainly because of the projects, otherwise the centre would have collapsed by now" (Researcher 2)
Besides the support given to individual researchers, other forms of capacity building might include development of the research infrastructure through for instance the provision of equipment to institutions hosting research as illustrated in the above quote (and an idea also linked to the idea of technology transfer).
Respondents gave other examples of capacity strengthening especially for institutions like hospitals which host global health research studies including; (i) expansion of bed capacity, (ii) provision of ambulances, (iii) ICT connectivity and (iv) training of local healthcare workers in basic skills to improve the quality of care. Overall such forms of benefits are regarded as instrumental to improvements in the quality of healthcare services offered in those institutions.
The forms of benefits that are articulated in sections i-iv above mainly aim to benefit research participants, researchers and the host institutions. The emphasis on forms of benefits aimed at local researchers and the local research institutions are clearly evident and the reason given for this was that, strengthening the capacity of the two (local researchers and the research institutions) is a necessary condition for benefiting the host countries.
Benefits to the wider community
The second broad category of forms of benefit sharing within global health mainly targets the wider community in which research is undertaken. Although research participants, researchers and strengthening of local institutions are a part of the community, this category outlines indirect benefits whose enjoyment is not based on direct involvement in research but rather are in keeping with the demands of social justice.
(vi) Provide social amenities
. "...we want to ensure that if you are carrying research within a particular community, you need to give them something back for instance a hospital or something, even if you are doing clinical research. It can be anything else that can benefit the community. Some sort of infrastructure, so that they can at least see that they are benefiting. Once you have done that, actually they will feel that they are part of the process..." (Civil Society Organisation 1).
Some respondents also suggested that provision of social amenities be considered a form of benefit to the community. The metaphor of giving back was used variously while appealing to the need to consider the broader interests of the host community while making decisions over which benefits to provide.
The rationale for providing such amenities as a valuable public good is illustrated by the following quote by a respondent from a civil society organisation
"... these people can at least feel that actually even though we are not part of this research, (meaning not directly participating in the research) our lives have also improved to some extent, even though I did not get money as an individual, I can see a nice school somewhere, I can see a dispensary, I can see a water point, things like that". (Civil Society Organisation 3)
(vii) Community mobilisation
"...So the benefits here, let's say, is that the women or the community no longer think of going to the traditional medicine men. They now know that "if my child has epilepsy, I will go to KEMRI..." (KEMRI Community Representative 3).
Global health research is also expected to mobilise communities towards positive changes in health seeking behaviour. Several community representatives' groups noted during the interviews that communities often acquire better knowledge of disease conditions being researched when they take part in research, and this contributes to positive changes in attitudes and practices towards health promotion.
The following quote by a member of a community representative group further illustrates a case of positive mobilisation;
"...I think the biggest benefit I have seen is the reduction in malaria cases, because this disease to be honest had killed many people. The cases reduced, and all was because those researchers taught us how to use the nets.../.../some members of the community did not even know what causes malaria..." (KEMRI Community Representative 2).
(ix) Other non research related assistance
"... So there is a programme already in place that benefits them, pays for their school fees, takes them to school, ploughs their land and plants, give them fertilizer. So you see this entire OVC (Orphans and Vulnerable Children) package has benefits and all we're asking from that particular population is just to see what the outcomes are" (Researcher1).
Global health research is also associated with other benefits that are not directly related to research. The above quote for instance illustrates how some researchers respond to pressing needs with benefits to the wider community in return for participation of specific groups in research. Interestingly, these forms of benefit sharing were not directly related to the research but were defined by the community needs.
The last category of forms of benefit sharing contains benefits that are aspirational in nature and therefore mainly result once research is complete.
(x) Availability of medical and public health tools
"...One of the issue is we get new products. I think that is a good thing because we get to get new products and we can be able to prevent much more diseases that we have been dealing with..." (Policy Maker 3).
Global health research was regarded by some as an opportunity for developing future medical and public health tools for resource poor settings. Access to such medical and public health tools was further considered beneficial in terms of the potential for research evidence to inform policy and delivery of health care services, suggesting some value given to research whose final outcome is generation of knowledge broadly defined. Such views acknowledge the potentially trans-generational aspects of research benefits.
(xi) Access to proven interventions
"...I think what we should be asking ourselves is that okay, "We have several candidates being put in place if one of them become successful how do we get access to this vaccine and I think that should be the bigger question that people should be asking..." (Researcher 5).
Apart from providing the opportunity to develop medical and public health tools, global health research is also expected to promote access to such interventions. The above quote explicates this expectation, suggesting that access to the actual products developed through research is an important benefit.