[Rona]

I completed lesson 4 after an in depth conversation with one of the staff responsible for some of the engagement activities at one of the sites conducting HPTN 073. What struck me is how hard it is to decide stakeholders that may not be “as influential” but because almost all play an important role. Even those that are representative of the target population, are important to maintain as ongoing sustained partners given their role for example either in the city (HIV prevention planning, HIV testing and counseling or service provider of one sort or another).  I found the prioritizing the most challenging part of the assignment.  I was struck by Patchara’s comment  about using the stakeholder matrix to determine how to involve stakeholders based on possibly their power and interest.  I would love to know how you all balance that with the need for longer term engagement with other stakeholders that may not be as central to a specific trial. Maybe that’s related to Anne’s question about how to most efficiently use limited resources.

[Rona]

The Division of AIDS has done a form a stakeholder mapping when working on broader outreach, awareness initiatives.  For those efforts, we identified the highest priority populations to target and then organizations that would be most appropriate to partner with for building awareness, education and information dissemination.  While the partner groups were selected through an application process, we were careful to ensure a balance of national vs. local organizations, geographic distribution (within the US) and an adequate number of organizations targeting each of the key populations.
Stakeholder engagement is an ongoing process and DAIDS maintains most of its ongoing partnerships through its funded research networks and the Office of HIV/AIDS Network Coordination, Legacy Project and the BTG website and listserv. DAIDS does maintain ongoing, direct partnerships through annual consultations, collaboration on forums, conference and satellite sessions, and around network and other types of meetings.

[Rona]

That’s a really good point Cathy.. I don’t think the ethics community is usually in my thoughts when I consider stakeholders but will now be much more so!

 

[Rona]

Discuss the link between formative research and community engagement for a trial. How are they alike? What are some differences between the two?
Formative research can set the foundation for ongoing community engagement by helping to identify key stakeholders and help researchers gain a better understanding of the community – key concerns, fears, belief, cultural/social practices and previous experience with research.  All of this information will help lead to more effective/respectful engagement throughout the trial. It also provides an opportunity for researchers to share information about the planned research, which again sets the stage for information exchange and open dialog.  As for the difference, I would think the key difference is that community engagement is more ongoing and takes place over the course of and even after a trial ends, whereas formative research is conducted before a trial begins.

Has your site conducted formative research activities? How have you involved community stakeholders in formative research activities at your trial site? If not, how could you potentially involve them?

Not being at a site, makes this difficult for me to answer. I was integrally involved with the Be the Generation Bridge (BTG) project, and through that project we conducted formative research.  The goal of that project was to increase awareness, knowledge and support for biomedical prevention research and although it was not specifically trial related, I think there are some similarities. Our goal was to develop materials and messages around biomedical prevention research for use on community in the US highly affected by HIV/AIDS.   We conducted formative research before undertaking any message/materials development by identifying and interviewing “Key Influencers” from these communities.  The purpose was to gain an understanding of what types of materials that would be most useful in these communities, namely African American, Latino and MSM, and to try to determine the extent of existing awareness/knowledge of HIV prevention research to guide messaging.  This research help guide the development of messages and materials and once they were drafted additional formative research (focus groups with the priority populations, and in depth interviews with health care providers in select cities) was conducted to obtain feedback on the message platform, and the draft materials developed with those messages.  This informed both content and design and how they could be used.

[Rona]

Stacey,

Measuring activities does seem so much easier than measuring overall impact.  Being conscious of the overall goals and objectives is a critical step in determining how and to what extent the activities influence/effect the community and the research.

 

[Rona]

I loved the clear examples of goals vs. objectives vs. activities. It’s important to make sure as Cathy said that the activities being conducted are really in service of the overall goal or objective.  And conversely, to identify activities that will help you meet the goals and objectives that you’ve identified as important.

I think each part of the research process has unique circumstances that can benefit from stakeholder input. For example, during formative research activities, working with stakeholders is critical in learning about the community and how it operates. Without this understanding, researchers could jeopardize their ability to work in a given region in an effective and respectful manner.  The trials might not be acceptable or may not be designed in a way that is feasible to conduct.  A study could be thwarted before it begins or recruitment may be slow because of a lack of stakeholder trust and support, or because it lack what is realistic for participants.

[Rona]

Hi all,

Like Anne and Mathias, I’m also interested in finding out how many trainings are conducted at the various sites and who participates.  Is it just the staff member responsible for stakeholder engagement or are others at the research site and/or others in the community included, and of course who conducts such trainings and what do they consist of?

I think ongoing training is challenging, though necessary to ensure that the awareness and familiarity goes beyond one single individual and is truly incorporated into the culture of the organization.

[Rona]

1) Stakeholders are critical to the development and conduct of research on a variety of levels.   Those stakeholders who are most affected by the research and/or most representative of potential participants play an important role in helping to shape study design and ensure that a study would be acceptable and feasible in a given community.   As was stated above, without their trust, support and acceptance, a study will not succeed.  Other stakeholders in the broader definition of the term are equally important in making sure there is general support, whether for funding, regulatory approval, ongoing ethical review etc.  While the various types of stakeholders have different effects on the research porcess, they are all vitally important

2)   Each of the NIH-funded HV/AIDS prevention research networks understand the importance of stakeholder engagement.  They all have established mechanisms for  engagement – CABS or similar groups are the primary means of community engagement but other forms be they forums or consultations are also used, particularly in preparation for specific research studies. MTN 017 was the perfect example. Of course, it varies to some degree by network, by site, and of course, by study. The Division of AIDS (where I’m located) is very supportive of stakeholder engagement and works with stakeholders in its own way on a regular basis.

[Rona]

I agree too.. The GPP is an ideal that we all believe in and having the exchange of real world experiences – sharing the practical issues faced at the sites implementing community engagement and approaches will be extremely valuable.

[Rona]

Hi all,

I have worked at the Division of AIDS at the National Institute of Allergy and Infectious Diseases at the NIH for over 20 years.  During that time, I have worked with all of our research networks and the community in one capacity or another.  I have served as a liaison to some of our network community advisory boads, have developed regional trainings for the community, and been an active member of our cross- network community group, Community Partners, since it was established in 2006.  I also worked with other community outreach efforts that we supported, including the NIAID HIV Vaccine Research Education Initiative and Be the Generation Bridge project.  I participated in the last update of the GPP guidelines and believe GPP has a lot to offer the sites in engaging community.  Since I am not a site, I recognize I have alot to learn from all of you and am really looking forward to it.

[Author]

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