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Research Advocacy - page 2

Types of Research Advocacy

Research advocates are involved in all areas of cancer research. This section will describe the different fields of research and how advocates contribute in those fields of research.

Advocates in BASIC RESEARCH

Basic research (also called bench research or fundamental or pure research) has as its primary objective the advancement of knowledge and the understanding of the relationship among different ideas. It is exploratory and often driven by the researcher's curiosity, interest, and intuition. Because of this, basic research is sometimes conducted without any practical end in mind, although it often has unexpected results leading to practical applications.

Going back to our arrow image, you can see we have been discussing what's on the far left, which is the beginning of the process. When you hear the term "bench to bedside" the "bench" part of the research refers to basic research, because this work takes place in a lab at a "bench".


 
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What do advocates do in BASIC RESEARCH?

Advocates bring a different perspective to basic research projects. Sometimes the researcher is so focused on one specific aspect of their research that they can easily forget the broader potential impact their research can have. Advocates remind researchers of the potential benefit to patients and can add the following specific perspectives.

  • Advocates think translational first; It’s never too early to talk about how the research will impact the care of cancer patients.
  • Advocates think collaboratively and promote team science. Their only motivation is to want the best science to be done, so they can see opportunities and suggest scientists work together.
  • In order to promote team science, advocates work hard to break down silos in research by working with researchers from different areas and connecting them with each other.
  • The main thing the advocate is concerned with is that the outcome of the research benefits patients. It may not be immediately but they always ask the question “Will the results of this research eventually benefit patients?”
  • Having a patient on the research team instills a sense of urgency to research. Researchers become partners with patients who need new treatments and knowing patients can be a strong motivation to researchers.
Why is it important?

All of the points above demonstrate why having an advocate involved at this stage is important. Basic research projects are, by their nature, very far from translating into a treatment or intervention for patients.

 

However, funders want to be able to tell donors how their research dollars will affect the wellbeing of cancer patients. The advocate has the ability to see the potential impact and remind the researchers of this impact.

 

They can also help the researcher talk about their research in such a way that the public can understand how their research may eventually impact patients. This is important in private funding as well as government funding. People want to know that their investment in research will benefit patients in a positive way so researchers need to know how to talk about it, and advocates can help them do this.

  • Funders of cancer research like the Department of Defense Congressionally Mandated Research Program and Susan G. Komen encourage involvement of advocates, even in basic research projects. See more information in the section titled “Being involved as a advocate in research projects”.
  • The applicant needs to keep in mind that the grant application review process involves advocates who will be rating their proposals. See more in the section titled “Reviewing scientific applications as a consumer or advocate reviewer”.
  • Many proposals now require a ‘lay’ abstract or impact statements in plain language. Researchers must be able to tell the public about their research in a way that everyone can understand.

“Science is a service. It is done for the benefit of humankind. If the ideas of science never influence the public and public policymakers, then science has not succeeded.”

Quote by in “The Problem of Boring Science” by Troy Campbell - Duke University’s Fuqua School of Business, News & Observer, December 26, 2013

Advocates in TRANSLATIONAL RESEARCH

Translational research takes discoveries made in the laboratory and 'translates' them into potential new treatments or diagnostic tests that may help patients in the future. Translational research, just like basic research, is usually carried out in a laboratory and applies knowledge gained from previously completed basic research.

Translational researchers attempt to bridge the gap between basic science or laboratory experiments (bench science) and clinical applications (bedside). Going back to our arrow image, you can see we have been discussing what's between basic research and clinical research, moving closer to patient applications.

Sometimes new observations can mean the idea needs to be sent back to basic researchers for further refinements, this is not a one-way bridge. This is called “bench to bedside and back”.

What do advocates do in TRANSLATIONAL RESEARCH?

Translational research can encompass many different types of studies. Promising ideas from basic research move into animal studies. If these are successful they then move into early clinical studies in humans. As these studies move more into the clinical setting, the input from advocates can be helpful to researchers.

Conducting early clinical trials or using patients tumor samples, requires interaction with patients.

How advocates can help patients:

  • Advocates can help with how to present the research project to patients
  • Insure the study schemes (requirements) are not unduly burdensome
  • Study consent forms to be sure they are clear and understandable
  • Insure that tumor donation consent forms are clear and understandable

As research moves closer to involving patients, the role of the advocate also increases. Advocates can look at the study from a patient perspective and provide input on potential barriers as well as provide information to patients in easy to understand terms.

Many funders and institutions realize the value of advocate input in translational research and require or strongly encourage their inclusion in translational research grants.

How advocates can contribute to translational research studies:
  • Translational cancer research has been promoted in several programs such as SPOREs (Specialized Programs in Research Excellence, NCI) and PROMISE grants (Komen). Both programs require the participation of advocates.
  • Translational research can involve basic researchers from the bench (lab) as well as clinical researchers from the clinic. Advocates can help facilitate communication between the basic and clinical researchers.
  • Many translational projects involve not only mouse studies, but can also involve early clinical trials and human tissue studies. Collecting tumor tissue from patients is sometimes a critical step for the success of a project. Advocates can help patients understand the importance of tissue donation.
Why is it important?

As research studies move closer to the clinic, the value of an advocate or patient perspective becomes increasingly important. Translational research is critical in the path of moving a good research idea to clinical practice. However, not all good research ideas translate into good clinical practice. An advocate can help researchers make the transition from the bench to the bedside in such a way that the critical questions are asked first. One of these questions can be if it is feasible within current clinical practice – does it “fit” within current capabilities.

 

In order for a good idea to translate into clinical practice, it must be feasible.

Advocates are good at accessing this aspect of a project and can offer insight and suggestions on how to move forward.

 
Below is a list of ways in which advocates can influence translations research.
  • Advocates offer their patient experience and perspective, putting a face of cancer in front of researchers, which results in a greater urgency to get the research done.
  • Advocates do not come with institutional bias and a need for ownership, so they can facilitate communication among and between different research groups. This can break down ‘turf’ wars and promote collaboration.
  • Advocates will ask questions others won’t ask and they will ensure the discussion is focused on patient impact and relevance to patients.
  • New ideas are the basis for research that will impact patients. Advocates are usually strong supporters of new ideas, which are sometimes harder to put forward to established researchers. They do not come with any one idea in mind and are more open to the new ideas.
  • Advocates can be a great voice to the community and on a national level to gain support for translational research.

 

 
 
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