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Research Advocacy - page 5

Advocate Involvement in Research Projects

Successful involvement of an advocate

Advocates should be involved early during the development of a research project, including the preparation of pre-applications and/or applications for grants.

Advocate involvement will be most meaningful if the advocate is given time to learn about the project and discuss how to optimize their engagement during the development of the project. Unfortunately sometimes advocates are contacted at the last minute. Then it is up to the advocate to determine whether they can meaningfully contribute with short notice based on their relationship with the researcher and knowledge of their project.

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However there are many researchers who are contacting advocates early in project development, building relationships and accepting input as the project is written as well as throughout the project – this is the preferred method as possible problems with the project are handled early on and corrected

 

Advocates should communicate regularly with the principal investigator on the application to keep informed of the progress of the project. Communication may occur via email, phone calls, and team meetings.


 
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Advocates should collaborate with the researcher to develop clearly defined roles and responsibilities. This is essential to build a trusting and respectful relationship.

What roles can an advocate have on a research project?

The advocate role will depend on their level of skill, experience and knowledge in cancer research and as an advocate. Depending on the nature of the project and their background, there may be ways that they can assist other than those mentioned in this general overview.

Application Submission
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Advocates can have a significant role as early as application submission. Even this early in the process, advocates can do the following:

 
  • Provide input and feedback on the impact of the project on patients by identifying the translation potential of the research (i.e., how meaningful or important is the outcome to patients).
  • Work with the principal Investigator to develop and review the scientific and patient impact sections to help communicate the importance of their project to cancer patients and their families.
  • Work with the research team to develop and review the public abstract and other portions of the application to ensure that terminology is understandable to a general, non-scientific audience and conveys the importance and overall impact of their research project on cancer research and patient care.
  • Review the entire application for correct grammar and understandability. Significant grammatical errors and poor proofreading are noticed by reviewers, and reflect poorly upon the applicant.
  • Collaborate in defining the advocate role during the project’s implementation and dissemination of the results.

Basic or translational Research Project

This stage of research is early in the translation process, however, researchers can always benefit from a patient perspective.

Below are some suggestions on how to partner with researchers on their basic or translational research grants:

  • Work with the principal Investigator to develop plain language summaries to communicate the importance of the results of their project to the general public.
  • Speak in the community about the project and its importance to patients. To maximize impact and enhance understanding, the advocate and the researcher can make the presentation as a team.
  • Work with the principal Investigator to create educational materials, events, webinars and/or teleconferences for local, regional, and national groups and organizations to inform them of the research they are conducting and its importance to cancer patients.
  • Participate in the project team update/planning meetings, seminars and other events important to their project’s success. Learn more about the project and identify ways to contribute by adding the patient perspective to the discussions.
Clinical Project (involving clinical trials):

This stage of research involves patients entering clinical trials and provides many more opportunities for critical advocate involvement. All industries employ focus groups of end users before rolling out a product. A clinical trial needs patients to enroll to answer the research question. Advocates can act as an in-house focus group to insure success.

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  • Participate in developing and reviewing the language contained in informed consent forms, questionnaires, and other documents related to patient involvement to maximize readability and sensitivity to patient needs.
  • Collaborate with the project team in the design and development of the clinical trial, providing input on potential barriers to accrual and/or retention.
 
  • Participate in developing patient-focused education materials, including study brochures, to provide a short, easy-to-understand description of the clinical trial.
  • Review the proposed design of a clinical trial to provide guidance from the point-of-view of a cancer patient with regard to eligibility, frequency of invasive testing, etc., and how patients may consider the trial as an option.
  • Participate in developing how the patient experience will be monitored, such as in the development of questionnaires or outlining topics for personal interviews. Provide assistance and support where appropriate throughout the study accrual period including addressing retention issues.
Career Development or Training Project

Working with researchers early in their career will help make their project more patient-focused and more likely to positively impact the lives of cancer patients. Advocates should be invited to:

  • Participate in mentoring committees and project presentations to provide the patient point of view, which will add a different and important perspective to the project.
  • Review publications and communications to help better explain the importance of their project to the community, as well as to other funders, in ways that are meaningful to patients.

How often should advocates meet with the research team?

  • Frequency of meetings with investigators should be driven by the research project plan and how often the team meets to discuss progress. In other words, advocates should be an active part of the team, not an infrequent or secondary participant.
  • The researcher’s application materials should include details on how often the research team will meet with advocates and the type(s) of meetings that will occur.

Compensating Advocates

This topic has been under discussion for many years and is implemented differently around the country. Originally, an argument was made that advocates had a conflict of interest and should not be compensated. Of all the members on a research project, advocates have the least conflict of interest, as their career and/or livelihood do not depend on the project, as the researchers does.

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This argument against compensation is beginning to fade – others have replaced it but ever so slowly researchers and funding agencies are beginning to see not only the value of advocate input but also the need to compensate them.

 

Compensation will vary depending on the extent of advocate involvement:

  • At a minimum, the advocate should be compensated for out-of-pocket expenses incurred to attend meetings and conferences as defined in the project application (e.g., mileage, parking, etc.).
  • Project honoraria or consulting fees for specific projects involving commitment of time and expertise that have a deliverable essential for the project are encouraged. Rates may be on an hourly basis or a fixed project fee as agreed upon by the project leader and advocate.
  • Commitment to provide funding for advocates to attend one or more national cancer research meetings to learn, network and maintain knowledge of recent cancer research and clinical care developments (e.g. SABCS, ASCO, AACR) are encouraged.
  • Compensation should be agreed upon during the submission of the application and justified in the budget justification section; including project and/or consulting fees, and attendance at national research update meeting(s).

 

CISN Note:
 

 

Susan G. Komen developed a written guidance for advocate involvement in Komen funded research. These principles and methods of engagement can be used in any research project funded by any organization.

http://ww5.komen.org/uploadedFiles/Content/ResearchGrants/GrantPrograms/AIS %20Advocate%20Involvement%20Guidelines.pdf

 

 

 

 
 
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