Dialogues on the social value of research among key stakeholders involved in health research in Kenya : Lessons for Public Engagement Lairumbi GM, Michael Parker, Ray Fitzpatrick & Mike English

Context & Approach Aim: Exploration of social value of research (the ‘what, who and when’) using an ethical framework Emanuel’s framework Benefits Beneficiaries Responsibilities Interviewed 50 key stakeholder groups in HRR in Kenya Researchers Policy makers IRBs/CSO/CRGs/CABs Funding bodies/Pharma

Aim: Exploration of social value of research (the ‘what, who and when’) using an ethical framework

Emanuel’s framework

Benefits

Beneficiaries

Responsibilities

Interviewed 50 key stakeholder groups in HRR in Kenya

Researchers

Policy makers

IRBs/CSO/CRGs/CABs

Funding bodies/Pharma

Why social value of research? Fundamental justification of research is human benefit (global goods) Social & economic conditions in RPS may compromise Unmet Healthcare needs Weak regulatory systems Poor exchange model between research, policy and practice Potential for unfairness & Distrust in the pursuit of a valuable goal Call for ‘democratic’ engagement with research

Fundamental justification of research is human benefit (global goods)

Social & economic conditions in RPS may compromise

Unmet Healthcare needs

Weak regulatory systems

Poor exchange model between research, policy and practice

Potential for unfairness & Distrust in the pursuit of a valuable goal

Call for ‘democratic’ engagement with research

Community views Short term benefits Regular monitoring Interventions under investigation General assistance Strengthening of services … from what they have been telling me, as we get into that research, there are those small benefits that they will get free treatment…(CR2)

Short term benefits

Regular monitoring

Interventions under investigation

General assistance

Strengthening of services

Researcher’s views What is here for me? Training Career Devt (Financial, Respect etc) Patents rights Knowledge/Public good … But when you are looking at a research project, the primary thing is that you have to think in terms of yourself and then the others. The question is what is it in this project for me? …(RES11)

What is here for me?

Training

Career Devt (Financial, Respect etc)

Patents rights

Knowledge/Public good

… But when you are looking at a research project, the primary thing is that you have to think in terms of yourself and then the others. The question is what is it in this project for me? …(RES11)

Policy maker’s views Community mobilisation Capacity building Health programmes Investment Evidence for policy

Community mobilisation

Capacity building

Health programmes

Investment

Evidence for policy

Regular monitoring Interventions under investigation General assistance Training Career Devt Patents rights Knowledge Innovation Profits Capacity building Contribution to science Reduce Dcs burden Health facilities H/care services Proven Intervention Mobilisation Capacity devt Evidence Health Prog Investment

Regular monitoring

Interventions under investigation

General assistance

Training

Career Devt

Patents rights

Knowledge

Innovation

Profits

Capacity building

Contribution to science

Reduce Dcs burden

Health facilities

H/care services

Proven Intervention

Mobilisation

Capacity devt

Evidence

Health Prog

Investment

Societal level barriers Conceptual barriers Practical barriers Barriers to thinking about Value of Research Local level stakeholders doing own things due to a number of barriers

Societal level barriers

Conceptual barriers

Practical barriers

Barriers to thinking about Value of Research

Local level stakeholders doing own things due to a number of barriers

Societal level barriers 1 Limited view of ‘value’ of research … But to the hungry chap at the village, if you ask them what they consider as a benefit, what goes into the mouth and comes out is probably the bigger thing. You’ll find that everybody you interact with wants a piece of the cake… and then there’ll be no cake left. So I think it’s a dilemma, ….(IRB3) … we actually need to inculcate that knowledge into everybody, /…/ even for the politicians , before you tell them that this is important, we will not move. Unless you tell someone that we are doing research on malaria and we want you to accept this, then we will not move, because things become too slow, then you get frustrated and you actually cannot do it. So that’s the problem… (RES11)

Limited view of ‘value’ of research

… But to the hungry chap at the village, if you ask them what they consider as a benefit, what goes into the mouth and comes out is probably the bigger thing. You’ll find that everybody you interact with wants a piece of the cake… and then there’ll be no cake left. So I think it’s a dilemma, ….(IRB3)

… we actually need to inculcate that knowledge into everybody, /…/ even for the politicians , before you tell them that this is important, we will not move. Unless you tell someone that we are doing research on malaria and we want you to accept this, then we will not move, because things become too slow, then you get frustrated and you actually cannot do it. So that’s the problem… (RES11)

Societal level barriers 2 … You see the discussions haven’t reached there yet. The discussion is just to ask of what benefit is this research to the people but we have not gone to the how , where we say that given that this is the benefit, how would you make it happen? It hasn’t reached there. What is common is “if this intervention is found to be effective, it will blah blah blah, but not “I will then” blah blah blah.. (RES12)

… You see the discussions haven’t reached there yet. The discussion is just to ask of what benefit is this research to the people but we have not gone to the how , where we say that given that this is the benefit, how would you make it happen? It hasn’t reached there. What is common is “if this intervention is found to be effective, it will blah blah blah, but not “I will then” blah blah blah.. (RES12)

Conceptual barriers 1 Tension between Inducement and participation … but personally, I have been followed and asked, these KEMRI people, are there no other ways they can use us so as to encourage the person being researched on, even making the neighbour eager, that if another research comes up they join… (Community Representative 2)

Tension between Inducement and participation

… but personally, I have been followed and asked, these KEMRI people, are there no other ways they can use us so as to encourage the person being researched on, even making the neighbour eager, that if another research comes up they join…

(Community Representative 2)

Conceptual barriers… 2 Prior engagement is conflated with inducement … The concept is good but I haven’t quite figured out how you operationalise it in real terms. In the sense that, I don’t believe that National Council for Science and Technology that oversees all research in Kenya would allow you to go to the community and start talking to them about research before you get authorization…/…/ And I’m not too sure they would agree. And that’s what our ethical approval follows …(IRB3)

Prior engagement is conflated with inducement

… The concept is good but I haven’t quite figured out how you operationalise it in real terms. In the sense that, I don’t believe that National Council for Science and Technology that oversees all research in Kenya would allow you to go to the community and start talking to them about research before you get authorization…/…/ And I’m not too sure they would agree. And that’s what our ethical approval follows …(IRB3)

Practical level barriers Complexity and longevity of research process and actor interests Lack of capacity among local stakeholders to coordinate the research process & address the issues Loss of institutional “memory” … As researchers here we are not able to engage meaningfully with benefit sharing because if you look at the research process, it is too slow and therefore it takes too long before any real benefit can be realised (RES6)

Complexity and longevity of research process and actor interests

Lack of capacity among local stakeholders to coordinate the research process & address the issues

Loss of institutional “memory”

… As researchers here we are not able to engage meaningfully with benefit sharing because if you look at the research process, it is too slow and therefore it takes too long before any real benefit can be realised (RES6)

Lessons for Public engagement..1 Stakeholders involved in research have different expectations community researchers political elites What to engage on( Process Vs Outcome benefit) Evidence may not be the immediate benefit for policy makers Whose interests?

Stakeholders involved in research have different expectations

community

researchers

political elites

What to engage on( Process Vs Outcome benefit)

Evidence may not be the immediate benefit for policy makers

Lessons for Public engagement.. 2