Capstone Project An advocate’s role in research The content, context, and effectiveness of participation By Jane Baker Segelken • An explanation of terms, use of simple, non-technical language, diagrams, or charts could be used in instances where they might be helpful. • Advocates do not have to understand every detail of the science, but we do need to know the impact on the human participants, the potential value to patients, and the timeframe. If the lay abstract is just a watered down version of the scientific abstract, I mark it down. They need to do their homework. Advocates bring an important piece to the table - the human side of cancer treatment - they were the patients generally. If the scientists just start with outdated statements “Breast cancer is..,”10 they haven't related to the human side of disease and need to rethink their commitment. • The lay abstract … They should be able to hand it to a secretary, the person who delivers coffee, some person in their facility that has no scientific background and that person should be able to understand what they are proposing! We do not need to have the statistics for [breast cancer] repeated. We, as advocates, and “consumers” of this disease, know them all too well, up front and intimately! • Applicants should always include a literature review on the state of affairs of what they are proposing to study, and why. • I think this [asking applicants to include additional details to help advocates better understand the intent and purpose of the proposal] is too much to ask of the applicant. Most of these proposals are produced on the researchers off time (as in they are not paid for this). The parameters of the requirements of the forms for submission are daunting enough as it is. Without this research, there will be no cure for cancer. The applicants should concentrate on the science (that is their job). It would be appropriate for the researchers to work with one or several advocates to produce the proposal. Another point on this is that I have found that during reviews, when the scientists are asked to explain some of the science to an advocate, they must explain it in laymans terms. Many times, this has led them to re-evaluate the science. • I was often bothered by feeling we were being hustled by some very inadequate advocacy ideas, tacked on because they were required.11 THE VALUE OF ADVOCACY According to one scientist, advocates: • help us remember that human beings are affected by the work we do. Only someone who has been directly affected by breast cancer can bring the appropriate perspective to this process. Your point of view is something we desperately need. There are, of course, many different roles an advocate can take. For me, being an advocate has always had several meanings depending on the activity in which I am participating. Scientific peer review panels vary in size and membership, often determined by the number of proposals to be reviewed. One panel I joined had three advocate and 15 scientist members while another had four advocates and 20 scientists. The days are long — we’ve been known to start at 7 a.m. and go until 10 p.m. — but we’re usually well fed (although most of the advocates complain the food is not designed to be served to those who are health conscious as many women who live with breast cancer are) in hotels with comfortable beds, exercise facilities, and occasionally an on-site location for an after hours massage or manicure. All advocate reviewers are there because we want to be — because we know that we’re the only way the scientists will get the information that only a breast cancer advocate can give. How else can we ensure the research that is funded is responsive to the needs of those living with breast cancer and those at high risk for the disease? With only one exception, when a review panel chairperson seemed to care more about rushing through the process than listening to what the advocates had to say12, I have been gratified by the feedback from the scientific panelists: • I first encountered advocates participating in the review progress at the DoD meetings. I walked away with mixed feelings after the first meeting. The level of training and preparation of the advocates was spotty. Several advocates had been through a training program and others had not. In those cases where the advocate hadn't been prepared, I think their involvement hindered the process a bit. For example, some advocates spent a lot of time telling their own story. While this definitely has a place in the grant review process (i.e., significance, etc), the comments were not focused enough to be helpful. However, my impressions have changed over time and certainly as a result of being exposed to the very strong group of advocates at the California meeting. • Terrific. Their presence often helps to focus the panel on what is important. Thus, it is clear that the role of the advocate on the research review panels takes many forms including: Putting a “face” on breast cancer, asking questions others won’t, focusing discussion on relevance, giving a sense of purpose, supporting non-status quo ideas, fostering community/public/national support, and influencing research into more translatable direction (Collyar, 2005). Advocates make the effort to be at “every table where decisions regarding breast cancer are made” for many reasons: • Sense of pride and commitment … The scientists need to be able to attach a face to the concept, not just cells in a petri dish. • To be that FACE of this disease, to speak for my many friends who are battling the disease, to speak for the family left behind to grieve and for the ones left behind to wonder if they'll be next ... to make the scientist realize that this is more than awarding money for discovery, papers, advancement of science ... this is to save lives, heal bodies, stop the fear. It means better breast cancer treatment and diagnosis, and prophylaxis, for me and all women. • My husband died of cancer and even though I am a health care provider, I was unable to get my questions answered in a truthful or timely manner. This is my way of helping those who do not even know the questions to ask, get the answers and the help they don’t even know they need. Effectiveness The question for many advocates, however, is whether the process works. I have found it to be both rewarding and frustrating: Sometimes we are asked to review proposals for which it is too early in the game (at the molecular level) to really know and/or understand the relevancy of the research. The fact that many applicants do not write a clear, comprehensive lay abstract is frustrating and requires a lot of detective work into the science (for which many of us do not have the background and an area we are instructed not assume is sound). The answer to the latter concern is to require the applicant to follow the guidelines and prepare a well-constructed lay abstract, and reject the proposal if it is not properly prepared. None of the funders with whom I have served and others I have researched are so committed to ensuring the lay-focused sections are prepared as instructed that they will send back those that don’t adhere. I would be delighted to know that a proposal was turned away because it did not recognize the needs of the advocate reviewers. For those proposals for which the relevancy, translation, and/or clinical component are not readily apparent, the applicant should have to include a section that specifically addresses issues of concern to advocates in lay language. Such a section would certainly help when answering questions about whether the research addresses a critical problem in breast cancer and whether it is truly relevant to the disease. Another way to improve the effectiveness of the advocates on the panels might be to include a series of lay-oriented questions designed specifically to complement the more technical components. Just as advocates are forced to consider the scientific and components for which they do not have a strong background, the scientist reviewers could consider the issues of importance to those experiencing the disease first hand. This would complement the sensitizing component brought to the panels by the advocates. Some of the scientists with whom I have spoken during breaks and meals say that advocates bring the day-to-day realities of breast cancer treatment to the table. Except on panels where psychosocial research proposals are considered, there are rarely discussions about quality of life or why patients don’t participate in clinical trials. Advocates want to know the translational expectations of the proposed research. And often they want to know why a proposal should be funded if it is more of what is already being done. In general, advocates views on the process’ effectiveness are: • Survivor/advocates are the experts on the relevance of the research and the innovativeness and impact of the ideas … survivor/advocates must show an open mind and a willingness to learn, but that does not mean that they should not be firm on those things on which they are the experts. • Each organization does it a bit different - I like meeting with the scientists on the same panel, with an equal vote at ACS, but I also like discussing with other advocates at Komen.13 • Do the work required to make sense of the proposal. It is clear when an advocate takes the time to try to understand, even without a science background. It is equally clear when an advocate has not done the work. You can only say the same thing so many times before they catch on. ADVOCATES, SCIENTISTS, FUNDERS Advocates say they get much out of being included in the review process and believe more people should be involved. Most advocates agree the process is not as daunting as it appears: • Advocates are there to point out the reality of people’s lives versus the needs of research. • I think we do the best we can. Advocates I reviewed with were not afraid to speak their minds, but often we didn't have a lot to say. • Once you get there, it all makes sense. It is clear advocates believe their participation in the research proposal review process is important and valuable to the scientists, and that the relationship is generally positive. According to advocates: • I felt best about the mutual respect of the scientists and advocates, and enjoyed hearing how they thought about these applications. But what role do the scientists believe the advocates play? In general, most of the scientists I talked with volunteered that the participation of advocates helped keep them grounded and that advocates bring perspectives to the process they don’t often consider. In addition, many scientists commented that advocates: • … remind scientific reviewers that real people are affected by our decisions • … play the essential role of bridging the sometimes huge gap between cancer patient's realities and the ivory tower. I really pay attention when advocates get excited about a project's focus, even if the science is a not very strong. The excitement generally reflects a real area of need. • … values and perspective vary from advocate to advocate … there isn't just one monolithic advocate perspective — instead it is an individual perspective, a culumation of ones experiences, just as it is for an individual scientist. • … advocates (educated) are always a plus to the study section … rarely in my experience have the advocates been a negative influence … they help to focus the scientists on the criticality of the problem. However, one scientist reviewer did have concern about the role of some of the advocates: • Arguing about the scientific approach or methods with the professional researcher (who has many years of experience conducting research and reviewing grants) is not always an effective way to convince them that there is a beneficial role for advocates in the review process. I have witnessed that this approach can make a scientific reviewer resentful, and dismissive of the advocate perspective. But of course, I have also seen advocates not respect the scientific perspective as well, assuming that the scientist reviewer is a monster, with no personal experiences that would help them see them have a human perspective. Although all the advocates and scientists with whom I had contact agree the system should not be dismantled — advocates are vital to ensuring appropriate research gets funded — advocates do have suggestions for funders that might improve the process and the involvement of advocates: • Familiarize yourself with what advocates do, so that you can understand how best to use us. • Look at California's program. There is none better. • Screen the advocates better. Just because you say you are committed, doesn't mean you are a good candidate to do grant reviews. Have an evaluation by the scientists and/or other advocates (on paper, anonymous) after the event. Some come to get a few days in a new city and haven't done the work required to have a good review. It puts the burden on those who did their homework and isn't fair to the cause. There needs to be a face to face with scientists at some point. • I think the DoD should have a little longer orientation for the consumers. Mentoring is good, but perhaps … after relationship is developed long distance, should occur at the site for a few hours, before panel begins. Perhaps, setting up a demo, with role-playing by previous reviewers. Scientists also weighed in with suggestions for how funders might improve the process: • It is important to have a range of ages, races, and geographic areas represented. • Perhaps have them observe a panel before participating in full, start out with fewer proposals to review and with a more experienced “buddy” to help reinforce the mechanics of the process. • Clearly state whether the advocate's role is to judge the idea or the methods, or both. RECOMMENDATIONS Training With a few exceptions, most of the advocates and scientists agreed that advocates come to the meetings well prepared and confident of their abilities to represent their constituencies. It is not realistic to expect advocates be up-to-date on all the latest scientific developments. Nor can advocates know all the human body’s processes. Thus, as one advocate said: • I think advocates who argue with the scientists about the science do a disservice to the process. We are experts about our constituents … [we] should agree to represent the consumers who live with breast cancer and concentrate on making sure our viewpoints are heard and included in the written comments. A scientist suggested that advocates work with “a more experienced ‘buddy’ to help reinforce the mechanics of the process.” I wholeheartedly agree. The process could allow a novice reviewer to learn how to look at proposals and learn the best way to be most effective before and during the panel review sessions. I would suggest that the mentor process be expanded: Train the mentors. Once mentors are selected, have a group conference call to go over the duties and expectations of the mentors. At that time, mentors will be able to ask questions and will have a chance to learn who else is mentoring. If a question or situation arises for which the mentor needs support she or he can turn to a colleague. Advise the novice advocate reviewer what she or he should expect from the mentor. Follow up the panel sessions with questions to each participant (novice and experience) about how they think the process went. In addition to offering advocate-to-advocate mentors, scientist to advocate mentors could be effectively utilized during training opportunities, such as at the scientific meetings to which the advocate is invited. The American Association of Cancer Researchers, for example, invites advocates to its meetings where they are paired with a scientist who helps the advocate navigate the meeting — i.e., to be able to ask questions of and discuss the presentations, and informally help the advocate understand the scientific concepts. Also, at meetings where advocates are encouraged to attend, there should be more emphasis by the organizers to ensure the presenters acknowledge the advocates presence by offering details on how the research results translate. Another scientist suggested that the entire panel — advocates and scientists — be “trained” to listen to each other. One idea would be to offer a reminder before and during the grant review meetings about the importance of respecting each other’s opinions. In addition, making sure that the comments of both the panelists and the advocates are included in the final comments is essential to ensuring the validity of everyone’s opinion. That, of course, should be without saying; if not, the panelists’ time and payments to them are wasted. In addition, several advocates indicated they would welcome feedback from the panel session sponsors. As one advocate said: • Details about my contribution and performance would help me learn and grow. How else will I know whether my work is having an impact or not and whether I’m an asset to the panel? The grant proposal reviews In general, advocates seem to think they need a more specific job. Many of the questions they are asked to answer when reviewing the proposals require them to make decisions on subjects about which they have little or no knowledge. For example, some evaluations require an analysis of the applicants’ research facilities and/or credentials; without being on the inside, as the scientists are, that is a very difficult area to analyze and advocates are sometimes put in the uncomfortable position of having to comment on and evaluate the parts of the proposal that are beyond their scope of expertise. Finally, if an application does not meet the funder’s application guidelines — for example, if the proposal does not have a well-written, clear, comprehensive lay abstract — it should be rejected and sent back for a resubmission. It is blatantly disrespectful to ask advocate reviewers to translate to plain English something the applicant clearly could not. In addition, a poorly prepared grant proposal could be an indication of a general lack of attention to quality; a lack of respect for advocates might indicate a lack of respect for patients as well. CONCLUSION The interaction that takes place between scientists and advocates as part of the grant proposal review panel process is one of the few opportunities these two disparate groups have to meet. There seems to be little disagreement that including advocates on the panels helps scientists and others see the big picture. And similar comments have been made about advocates who join scientists at meetings, on committees, and in the public policy arena. While most advocates believe the process works, many would like to see the process expanded to include more advocates on more review panels. And most agree there are still improvements to be made. In conversation with a dozen or so advocates at the Era of Hope (DoD) meeting in Philadelphia in June 2005, a vast majority expressed the opinion that advocates are still not involved at the level where the research priorities are established. In addition, those same advocates expressed concerns about:  What happens when the research funding runs out? There is no mechanism for tracking the research and thus no opportunity for follow-up. Advocates would like to know what happens to the research after the DoD funds it.  Level of research – some advocates voiced an opinion that a large percentage of the research was very early basic research. Some even when so far as to suggest that this research was research “for the sake of research.”  Priority of funding – many advocates would like to see more focus on translational research and high priority given to collaboration in general with a focus on scientists and advocates collaborating together. During a phone conversation with a scientist I served with on the California Breast Cancer Research Program, it was suggested that a good research project would be to see how the funded projects and grant initiatives that included advocates and scientists on the panels play out. A good way to judge the efficacy of the procedure would be to evaluate the outcomes compared to others that are not funded by the same mechanism. Her idea is one she and I will continue to discuss with the goal of possibly proposing a project to the funders who host the current grant review meetings. Several of the advocates with whom I spoke or surveyed had, as have I, reviewed for both public and not-for-profit funders. The difference between the two is remarkable: the Susan G. Komen Foundation, for example, segregates advocates with advocates and scientists with scientists. The groups meet and discuss separately. By comparison, in grant review meetings held by public funders, such as the California Breast Cancer Research Program, advocates and scientists meet together. It is unclear what weight or influence the advocate opinions hold in the private funding review process, and one person commented: • “I think they [private funder] ask advocates to be on their panels because it looks good. The women I met with were more interested in getting done early and going shopping than giving the proposals a good review.” I hope that is the exception rather than the rule since comments like that were rare. Instead, most advocates believed that in general scientific peer review panels that included both scientists and advocates allowed the two to meet successfully, all the while continuing to stand up for the aspects of research they believe to be of utmost importance. An advocate’s duty is to support those she or he represents and to act in their best interest on their behalf. Most advocates believe their involvement in research-funding decision-making has resulted in a more judicious allocation of public and private resources. With additional consideration for the needs and abilities of advocates, their contribution to the process could be even more beneficial. 1 According to its website (www.stopbreastcancer.org), the National Breast Cancer Coalition is the nation's largest breast cancer advocacy group, with more than 600 member organizations and 70,000 individual members and supporters. The organization works to educate and train individuals to be effective activists and to influence the public policies that affect breast cancer research and treatment. 2 Congressional Testimony by Fran Visco, President, National Breast Cancer Coalition, before the House Appropriations subcommittee on Military Quality of Life and Veterans Affairs; Fiscal 2006 Appropriations: Military Quality of Life and VA, April 7, 2005. 3 The Ithaca Breast Cancer Alliance (IBCA), Ithaca, New York. 4 Project L.E.A.D. (Leadership, Education And Development) is a science training course designed to help breast cancer activists influence research and public policy processes. http://www.natlbcc.org/bin/index.asp?strid=482&depid=7&btnid=1 5 http://cdmrp.army.mil 6 I have served with the DoD four times, the last being a special session where “experienced” reviewers were asked to participate. 7 The process to funding is often a multi-part procedure. Most funders convene numerous panels that each look at the proposals, eliminating out those that do not meet certain criteria or have not followed the application guidelines. 8 In conversation, some advocates express frustration with the types of research being funded. These advocates have indicated they would like to see all advocates argue for or against specific funding mechanisms during the review panel meeting rather than simply comment on proposals being put forth. While I agree the research agenda must be changed, I think there are other forums for such discussion. 9 Depending on the panel, advocates may review proposals from pre- or post-docs or experienced primary investigators. Some proposals are to be judged on innovativeness, others on simply the idea itself. 10 Many proposals start out with statistics such as breast cancer is the … or one in eight will … advocates know that information. Applicants should not use precious space to tell us what we already know. 11 Some funders ask applicants to include a section on how they see the proposed research in terms of patient advocacy. Other funders ask applicants to explain their views on the research and its relevancy to breast cancer. 12 The chair was rude and dismissive of the advocates, at one point calling on us by simply asking if we had “anything different to add” before we spoke. If not, she said, we could move on. Interestingly, the advocates on that particular panel had been generally brief with comments and only discussed the specific advocate perspective if necessary. We have all learned it is not always necessary to say something if it does not add to the discussion. 13 Most review panels, including American Cancer Society have scientists and advocates sitting at the same table. Susan G. Komen review panels have two separate panels — one where scientists meet and the other where advocates meet. 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