DEFINING AND NEGOTIATING THE SOCIAL VALUE OF RESEARCH IN PUBLIC HEALTH FACILITIES: PERCEPTIONS OF STAKEHOLDERS IN A RESEARCH‐ACTIVE PROVINCE OF SOUTH AFRICA
DEFINING AND NEGOTIATING THE SOCIAL VALUE OF
RESEARCH IN PUBLIC HEALTH FACILITIES: PERCEPTIONS
OF STAKEHOLDERS IN A RESEARCH-ACTIVE PROVINCE OF
SOUTH AFRICA
ELIZABETH LUTGE, CATHERINE SLACK AND DOUGLAS WASSENAAR
Keywords
social value,
collateral benefits,
aspirational benefits,
gatekeepers,
esearchers
ABSTRACT
This article reports on qualitative research conducted in KwaZulu-Natal,
South Africa, among researchers and gate-keepers of health facilities in
the province. Results suggest disparate but not i
econcilable perceptions
of the social value of research in provincial health facilities. This study
found that researchers tended to emphasize the contribution of research
to the generation of knowledge and to the health of future patients while
gate-keepers of health facilities tended to emphasize its contribution to
the healthcare system and to cu
ent patients. Furthermore, relations
etween research stakeholders were perceived to be somewhat fragile,
making it difficult for stakeholders to achieve consensus about the social
value of research, as well as on ways to maximize value. Interventions to
negotiate a shared perspective on the social value of research would
appear to be wa
anted, and the findings of this study suggest some
focus areas for such intervention.
BACKGROUND
The social value of research has emerged in recent deca-
des as an important criterion for ethical research. In
early guidelines the social value of research was only
iefly alluded to and the reader was left to operational-
ize the concept. Amongst earlier ethics guidelines, it is
perhaps the Nuremberg Code XXXXXXXXXXwhich best identi-
fies social value as desirable, and defines valuable
esearch most clearly as that which yields �fruitful results
for the good of society, unprocurable by other methods
or means of study, and not random and unnecessary in
nature�. Although not expressly identified as the standard
of social value, this definition is echoed in the Interna-
tional Ethics Guidelines for Biomedical Research
involving Human Subjects (�CIOMS guidelines�) of
2002,2 as a requirement for ethical research, while the
new draft (not yet finalized) explicitly lists social value as
the first guidance point for ethical research.3
In recent years, the concept of social value has
een more clearly articulated and elaborated upon
as an ethical requirement of research in the frame-
Address for co
espondence: Elizabeth Lutge, KZN Department of Health – Epidemiology, Health Research and Knowledge Management,
Natalia Building Langalibalele Street Pietermarizburg PIetermarizburg KwaZulu-Natal 3001, South Africa. Email: XXXXXXXXXX
1 The Nuremberg Code 1947. BMJ 1996; 313: 1448.
2 Council for International Organizations of Medical Sciences
(CIOMS XXXXXXXXXXInternational Ethical Guidelines for Biomedical
Research Involving Human Subjects. Available at http:
www.cioms.ch
publications/guidelines/guidelines_nov_2002_blu
.htm Accessed on 2
November 2016.
3 Council for International Organizations of Medical Sciences
(CIOMS XXXXXXXXXXInternational Ethical Guidelines for Biomedical
Research Involving Human Subjects. Available from http:
www.cioms.
ch/index.php/12-newsflash/394-the-public-consultation-on-ethical-
guidelines-is-now-closed
VC 2017 John Wiley & Sons Ltd
Bioethics ISSN XXXXXXXXXXprint); XXXXXXXXXXonline) doi:10.1111
ioe.12323
Volume 31 Number XXXXXXXXXXpp 128–135
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work provided by Emanuel and others.4 Within this
framework, the concept has evolved over time. In
the first iteration,5 the social value of research was
defined as being the �enhancements of health o
knowledge. . . derived from the research� which
eflects the implied definitions in major interna-
tional guidelines such as the Nuremberg Code6 and
CIOMS guidelines.7
In subsequent elaborations of Emanuel�s framework8
the essence of this first definition of social value was
etained but important qualifications were introduced in
the benchmarks (discussed in more detail later). These
enchmarks recognize that social value is likely to be
conceptualized and measured differently by different ben-
eficiaries of research, and that value in research is not a
constant – it can both be enhanced and undermined by
factors within or external to the research process. The
enchmarks are crucially important for specifying social
value and reflect the complexity of applying any ethical
standard in various socio-cultural contexts, including the
standard of social value. It could be argued that there are
objective indicators of whether research has social value,
such as disability and quality adjusted life years, o
whether it co
esponds to national health priorities. Yet it
is also possible, even likely, that various research stake-
holders will judge the social value of a study differently,
pointing to the elements of value that are subject to
social context.9 Such differing judgements may reflect the
interests of specific social groups that may have diverging
perspectives, needs and priorities.10
There is much literature on the importance, and pro-
cess, of eliciting such views from various stakeholders
or �communities�, particularly in relation to HIV
esearch.11 There have also been several studies investi-
gating the related concept of research benefits.12 To
date, however, much of the literature has tended to
define the inherent value of research according to its
contribution to new knowledge, and this has been the
point of departure for empirical studies on this sub-
ject.13 Our study underscores that this �traditional� defi-
nition of value is not always shared by key research
stakeholders, and inte
ogates the opinions of both
esearchers and non-researchers around this concept.
4 E.J. Emanuel, D. Wendler & C. Grady. What makes clinical research
ethical? JAMA 2000; 283: 2701 – 2711; E.J. Emanuel et al. What makes
clinical research in developing countries ethical? The benchmarks of eth-
ical research. J Infect Dis 2004; 189: 930–937; E.J. Emanuel, D. Wendle
& C. Grady XXXXXXXXXXAn ethical framework for biomedical research. In The
Oxford Textbook of Clinical Research Ethics, E.J. Emanuel et al. New
York: Oxford University Press.
5 Emanuel, Wendler & Grady. 2000, op. cit. note 4.
6 The Nuremberg Code 1947. BMJ 1996; 313: 1448.
7 Council for International Organizations of Medical Sciences
(CIOMS XXXXXXXXXXInternational Ethical Guidelines for Biomedical
Research Involving Human Subjects. Available at http:
www.cioms.ch
publications/guidelines/guidelines_nov_2002_blu
.htm [accessed 2
November 2001].
8 Emanuel et al. 2004, op. cit. note 4; Emanuel, Wendler & Grady 2008,
op. cit. note 4.
9 P.W. Geissler 2011. Studying Trial Communities: Anthropological and
Historical Inquiries into Ethos, Politics and Economy of Medical
Research in Africa. In Evidence, Ethos and Experiment: the Anthropol-
ogy and History of Medical Research in Africa. P.W. Geissler & C. Moly-
neux, eds. New York: Berghahn Books; 2011. Available from: http:
www.ncbi.nlm.nih.gov
ooks/NBK184571
10 D.R. Wassenaar & N. Mamotte XXXXXXXXXXEthical issues and ethics
eviews in social science research. In The Oxford handbook of interna-
tional psychological ethics. M. Leach et al., eds. New York: Oxford Uni-
versity Press: XXXXXXXXXX.
11 M.O. Folayan et al. Debating Ethics in HIV Research: Gaps between
Policy and Practice in Nigeria. Dev World Bioeth 2015; 15(3): 214–225;
M.O. Folayan, K.S. Oyedeji & O.A. Fatusi OA. Community Members�
Engagement with and Involvement in Genomic Research: Lessons to
Learn from the Field. Dev World Bioeth 2015; 15(1): 1–7; D. Allman,
M.H. Ditmore & K. Kaplan. Improving Ethical and Participatory Prac-
tice for Marginalized Populations in Biomedical HIV Prevention Trials:
Lessons from Thailand. PLOS ONE 2014; 9(6): e XXXXXXXXXXdoi:10.1371
journal.pone XXXXXXXXXX; K.F. King et al. Community engagement and the
human infrastructure of global health research. BMC Med Ethics 2014;
15: 84. DOI: XXXXXXXXXX/ XXXXXXXXXX; J. Koen et al. �It Looks Like You
Just Want Them When Things Get Rough�: Civil Society Perspectives
on Negative Trial Results and Stakeholder Engagement in HIV Preven-
tion Trials. Dev World Bioeth 2013; 13(3): 138–148; K.M. MacQueen
et al XXXXXXXXXXStakeholder Engagement Toolkit for HIV Prevention Trials.
FHI 360. Available at https:
www.fhi360.org
esource/stakeholder-
engagement-toolkit-hiv-prevention-trials; UNAIDS/AVAC (2011).
Good participatory practice: Guidelines for biomedical HIV prevention
trials. Joint United Nations Programme on HIV/AIDS (UNAIDS).
Geneva, Switzerland. Available at http:
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M. Ukpong & K. Peterson 2009. Oral Tenofovir Controversy II: Voices
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12 D.M. Kamuya et al. �When they see us, it�s like they have seen the ben-
efits!�: experiences of study benefits negotiations in community-based
studies on the Kenyan coast. BMC Med Ethics. 2014; 15: 90. doi:
10.1186/ XXXXXXXXXX; G.M. Lairumbi et al. Forms of benefit sharing
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The Social Value of Research: Perceptions of Stakeholders 129
VC 2017 John Wiley & Sons Ltd
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.htm
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.htm
http:
www.ncbi.nlm.nih.gov
ooks/NBK184571
http:
www.ncbi.nlm.nih.gov
ooks/NBK184571
http:
https:
www.fhi360.org
esource/stakeholder-engagement-toolkit-hiv-prevention-trials
http:
https:
www.fhi360.org
esource/stakeholder-engagement-toolkit-hiv-prevention-trials
http:
www.unaids.org/en
esources/documents/2011/20110629_JC1853_GPP_Guidelines_2011%20OK
http:
www.unaids.org/en
esources/documents/2011/20110629_JC1853_GPP_Guidelines_2011%20OK
AIMS
This article reports on a subset of data from a qualitative
study exploring perceptions of research conducted in
provincial health facilities in KwaZulu-Natal, South
Africa.14 KwaZulu-Natal is an appropriate location fo
such research, because its population is heterogeneous,
and it has for the past few decades been the focus of
intense health research activity, primarily in the fields of
HIV/AIDS and TB. Research in this province has
informed clinical treatment protocols and the develop-
ment of new treatments for these diseases.15
The study participants were managers in the provincial
government�s Department of Health (DoH), and
esearchers both internal and external to the Depart-
ment. DoH managers control access by researchers to
provincial health facilities and are among those stake-
holders who are likely to use the results of research.16
Varying notions of �valuable� research in provincial
health facilities emerged as a key theme, as reported and
discussed below.
METHODS
Semi-structured in-depth interviews were conducted with
two critical stakeholder groups: firstly, researchers (both
those external to the DoH who conduct health research
within DoH facilities as well as doctors employed by the
DoH who conduct research as part of their clinical