scientific integrity

Participation: What counts?

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The Grapevine
The Grapevine

Community participation is central to CBPR.  Although definitions of community participation are many and various we understand community participation generally as working together with members of a community to achieve mutually beneficial outcomes in an equitable and ethical manner.

When we undertake CBPR with a community, what does participation actually look like?  Meredith Minkler (2004) cautions researchers about the fluid boundaries of what might constitute community participation and meaningful and ‘valid’ research.

The commitment of researchers to adhere to methods and approaches that lead to valid and reliable findings and that are commensurate with scientific rigour might serve to complicate the idea of community participation further.  In my own experience, I know that participation means that community members have to validate their participation by signing a consent form and coming along to meetings and events which are part of the CBPR process.

The quandary for me lies in the validation of participation.  When I was entering the community with which I was researching, I had casual conversations, sometimes opportunistically, with individuals and community groups.  This was part of the trust building and relationship development that is so crucial to the CBPR approach.  Yet it seems that this phase can all too easily be glossed over as a ‘given’ of participatory research.  What was clear to me, during this period of first steps into the community, was that those who did not want to ‘sign up’ as participants were in fact participating by willingly discussing their concerns with me in an informal manner and in informal spaces. Some individuals were pivotal to my endeavour to recruit ‘consented’ participants, by pointing out potential interested parties, making introductions at community events and helping to promote the research within their own networks.  These were the people who gave me an anchor to latch onto each time I entered the community in those early months.

I have no doubt that some of the relationships and behaviours within, and resulting from, social hierarchies in the community contributed to the decision for some to not participate officially in the research. Draper, Hewitt and Rifkin (2010) remind us that the diverse and complex nature of communities requires community participation to be approached as a social process, enabling participation to take many forms.

So should individuals and groups, such as those mentioned above,  be considered participants?  They welcomed me into the community, voiced their opinions on the research topic, and assisted the research process.  Is what they were doing, participation?  Because they did not sign a consent form, and did not participate in the official CBPR community meetings they are not officially participants and their opinions on the research topic cannot be considered as part of the research data.  Is it ethical to regard their unofficial involvement as a silent ‘given’ of CBPR?   Is it ethical to not validate their participation?   Do they count?

What are your thoughts?  What is your experience?

 

 

Draper, A. K., Hewitt, G., & Rifkin, S. (2010). Chasing the dragon: Developing indicators for the assessment of community participation in health programmes. Social Science & Medicine, 71(6), 1102-1109.

Minkler, M. (2004). Ethical challenges for the “outside” researcher in community-based participatory research. Health Education & Behavior, 31(6), 684-697.

Image: Seng Mah: Flickr.com

 

“ . . . the real and the ideal in CBPR are still a work in progress . . .”

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 “…the real and the ideal in CBPR are still a work in progress for the majority of projects.”
“…the real and the ideal in CBPR are still a work in progress for the majority of projects.”

Kraemer Diaz, A. E., Spears Johnson, C. R., & Arcury, T. A. (2015). Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research. Health Education & Behavior. doi: 10.1177/1090198114560016

In this recent publication the authors present findings from their investigation into the perceptions that promote and discourage scientific integrity in CBPR.  In depth interviews were held with professional and community CBPR investigators.

Professional investigators identified external pressures as the main barrier to scientific integrity in CBPR.  External pressures, such as publishing, applying for funding and career advancement are seen to promote traditional research structures which do not include collaboration.  The authors point out that these external pressures discourage scientific integrity in CBPR by undermining community participation, a foundational aspect of CBPR.

While community investigators were found to not be subject to the same pressures, their perceptions demonstrated that community participation is “paramount” for maintaining scientific integrity in CBPR.

The authors conclude that “active” community participation is overall the most important perception in maintaining scientific integrity in CBPR and emphasise that it is not enough to just idealise participation, but that it needs to be “realized through training, shared funding, and community trust and engagement at every step, including oversight of scientific integrity”.

 

Image: roevin Flickr.com

Participation: What counts?

Posted on Updated on

 

The Grapevine
The Grapevine

Community participation is central to CBPR.  Although definitions of community participation are many and various we understand community participation generally as working together with members of a community to achieve mutually beneficial outcomes in an equitable and ethical manner.

When we undertake CBPR with a community, what does participation actually look like?  Meredith Minkler (2004) cautions researchers about the fluid boundaries of what might constitute community participation and meaningful and ‘valid’ research.

The commitment of researchers to adhere to methods and approaches that lead to valid and reliable findings and that are commensurate with scientific rigour might serve to complicate the idea of community participation further.  In my own experience, I know that participation means that community members have to validate their participation by signing a consent form and coming along to meetings and events which are part of the CBPR process.

The quandary for me lies in the validation of participation.  When I was entering the community with which I was researching, I had casual conversations, sometimes opportunistically, with individuals and community groups.  This was part of the trust building and relationship development that is so crucial to the CBPR approach.  Yet it seems that this phase can all too easily be glossed over as a ‘given’ of participatory research.  What was clear to me, during this period of first steps into the community, was that those who did not want to ‘sign up’ as participants were in fact participating by willingly discussing their concerns with me in an informal manner and in informal spaces. Some individuals were pivotal to my endeavour to recruit ‘consented’ participants, by pointing out potential interested parties, making introductions at community events and helping to promote the research within their own networks.  These were the people who gave me an anchor to latch onto each time I entered the community in those early months.

I have no doubt that some of the relationships and behaviours within, and resulting from, social hierarchies in the community contributed to the decision for some to not participate officially in the research. Draper, Hewitt and Rifkin (2010) remind us that the diverse and complex nature of communities requires community participation to be approached as a social process, enabling participation to take many forms.

So should individuals and groups, such as those mentioned above,  be considered participants?  They welcomed me into the community, voiced their opinions on the research topic, and assisted the research process.  Is what they were doing, participation?  Because they did not sign a consent form, and did not participate in the official CBPR community meetings they are not officially participants and their opinions on the research topic cannot be considered as part of the research data.  Is it ethical to regard their unofficial involvement as a silent ‘given’ of CBPR?   Is it ethical to not validate their participation?   Do they count?

What are your thoughts?  What is your experience?

 

 

Draper, A. K., Hewitt, G., & Rifkin, S. (2010). Chasing the dragon: Developing indicators for the assessment of community participation in health programmes. Social Science & Medicine, 71(6), 1102-1109.

Minkler, M. (2004). Ethical challenges for the “outside” researcher in community-based participatory research. Health Education & Behavior, 31(6), 684-697.

Image: Seng Mah: Flickr.com

 

“ . . . the real and the ideal in CBPR are still a work in progress . . .”

Posted on Updated on

 “…the real and the ideal in CBPR are still a work in progress for the majority of projects.”
“…the real and the ideal in CBPR are still a work in progress for the majority of projects.”

Kraemer Diaz, A. E., Spears Johnson, C. R., & Arcury, T. A. (2015). Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research. Health Education & Behavior. doi: 10.1177/1090198114560016

In this recent publication the authors present findings from their investigation into the perceptions that promote and discourage scientific integrity in CBPR.  In depth interviews were held with professional and community CBPR investigators.

Professional investigators identified external pressures as the main barrier to scientific integrity in CBPR.  External pressures, such as publishing, applying for funding and career advancement are seen to promote traditional research structures which do not include collaboration.  The authors point out that these external pressures discourage scientific integrity in CBPR by undermining community participation, a foundational aspect of CBPR.

While community investigators were found to not be subject to the same pressures, their perceptions demonstrated that community participation is “paramount” for maintaining scientific integrity in CBPR.

The authors conclude that “active” community participation is overall the most important perception in maintaining scientific integrity in CBPR and emphasise that it is not enough to just idealise participation, but that it needs to be “realized through training, shared funding, and community trust and engagement at every step, including oversight of scientific integrity”.

 

Image: roevin Flickr.com