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Advocates in Research Working Group Recommendations

By Nancy Roach, the Founder of C3 and Chair of its Board of Directors

A National Cancer Institute (NCI) working group has developed recommendations about how to engage advocates effectively in NCI research activities.  The recommendations are open to public comment until November 30, 2009.  Rather than go into detail about the recommendations, I will explain from my personal experience why I feel they are important and present C3’s feedback.

The recommendations fill an existing vacuum

The first time I was invited to participate in a research meeting as a research advocate, I was excited, but uncertain about my role and responsibilities.  I knew I was attending a research meeting  and understood the basics of research.  But I didn’t understand how the research organizations were organized (what the heck was CTEP anyway?), how they functioned, or why I was invited to the meeting.

I left the three-hour meeting feeling like a failure.  I’d sat in the room listening to researchers talk about colorectal cancer research ideas and had no idea what I was supposed to do.  I didn’t understand the difference between concepts, protocols, and active trials and couldn’t decipher the acronym-speak.  When I was asked if I thought patients would be interested in a specific trial, I had no way to evaluate the question.

Over time, I learned that my experience was not unusual.  Some groups welcomed advocates as full partners in the clinical research process, and some advocates helped shape meaningful research.  Other groups welcomed advocates to meetings but not in the nitty-gritty of research development, and other advocates spoke rarely if at all.  In other words, our role was frequently unclear to everyone including ourselves.

The lack of clarity meant that developing training and support was hard – if we don’t know what we’re supposed to do, how can we learn how to do it?  And if researchers don’t know why we are in the room, why would they be interested in our feedback?  After all, most of the researchers have advanced degrees in their specialties.  We are there because we, or someone we love, got sick.  Why should our opinions matter?

Time for change

In 2007, NCI Director John Niederhuber asked the NCI Director Consumer Liaison Group (DCLG) for recommendations on how to best involve research advocates in NCI activities.  The DCLG constituted the Advocates in Research Working Group (ARWG) and charged them to work with NCI’s Office of Advocacy Relations (OAR) to develop recommendations.

The six high-level recommendations provide a framework for identifying, involving and supporting advocates, and address issues such as training, compensation and support.  They were presented to the DCLG in October 2009. This PowerPoint presentation reviews the process and participants behind the ARWG, and sets out the recommendations in some detail.

C3’s response

C3, through my participation, was honored to be involved with this effort from the start, along with other advocates, researchers, NCI staff and OAR.  I frequently reached out to C3’s research advocates to get their individual and collective feedback on the issues.  Given that C3 helped shape the recommendations, it’s not surprising that we are pleased with the outcome.  We believe the recommendations will ensure that when advocates participate in research activities:

  • Advocates will understand how to fulfill their role effectively
  • Other participants will understand the value of advocate participation
  • Over time, the value of advocate participation will be evaluated and thereby improved

Aspects of the recommendations which we strongly support include:

  • Development of a trained advocate cadre which allows advocates to cycle in and out of activities, and promotes engagement of new advocates
  • Clear articulation of conflict-of-interest principles
  • Training and orientation for advocates as to their role in researchTraining and orientation for researchers as to the role of the advocates in research

Having said that, no doubt there are areas where the recommendations will evolve once theory hits reality.  For example, some of the recommendations could hold advocates to a different standard than the other players at the research table.  Recommendation 2.1 (slide 26) states that NCI will develop inclusion and removal criteria for the advocate cadre.  The intent behind the recommendation is aimed at identifying the knowledge and skills that advocates need for successful engagement.  For example, if an advocate needs human subject protection training prior to engagement, that could be one of the criteria. At the same time, researchers aren’t subjected to this kind of explicit vetting by NCI prior to engagement.  Should they be?  If not, should advocates?  We are comfortable with the intent behind the recommendation, and will watch the reality of implementation with great interest.

We believe that at this point, forward motion is the best way to identify and resolve problems.

Forward motion is where the real challenges will occur.  Implementation will take time, resources and a culture change, because substantive involvement of advocates in research can be unusual.  Personally, I’m always surprised by that, because I view advocates as the customers of cancer research – and who develops a product without involving customers?  However, our involvement with clinical research is more complex to figure out than our involvement in the development of a new car or toothpaste, and these recommendations are a step in the right direction.

C3 urges NCI leadership to accept these recommendations and provide the resources and support necessary to implement them.  Dr. Niederhuber, the current NCI Director, has been committed to these efforts.  We hope that if and when a new Director is appointed, he or she shows the same level of commitment to our effective involvement with the system.

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One Comment;

  1. Lynne Cargen said:

    Great article, Nancy! Thank you for putting into words what so many of us have felt. I really enjoyed talking with you over our glass of wine at the NCI meeting.

    Best -

    Lynne Cargen
    Research advocate
    Vanderbilt Ingram Cancer Center

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