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Research Advocacy Examples

Lung Cancer Presentations
by STARS Participants

Diversifying Clinical Trial Inclusion Criteria Current Challenges & Potential Solutions -- Jill Feldman (2021 WCLC Abstract)

Treatment Patterns in Patients With EGFR Positive Lung Cancer A Real World Patient Report -- Ivy Elkins (2021 WCLC Abstract)

Example Research Advocate Activities

Patient research advocates PRAs) engage in a wide variety of activities.  All of them require effective communication skills, ability to represent the larger community of lung cancer patients (not just one's own experiences), knowledge of the research process and clinical trials, and an understanding of the medical science of lung cancer screening, diagnosis, treatment, and patient care. Below are some examples of various PRA activities and the tasks and skills they use.

Grant Reviewer

People who fund grants (funders) seek PRAs to critique grant applications from a patient perspective and help determine which applications to fund. 

Tasks and Skills:  PRAs offer perspective in group meetings with researchers and scientists; assess ways proposed projects will impact survival and quality of life for people who have cancer.

Pharmaceutical Advisory Board

Pharmaceutical companies often form patient advisory boards to provide feedback on clinical trial design or experience with a particular drug or class of drugs.

Tasks and Skills:  PRAs provide feedback on clinical trial protocol and eligibility criteria to remove enrollment barriers; describe patient experiences with relevant drug class; offer solutions to company’s concerns.

Ethics Review Board Member

Most research institutions have an ethics review board, but some use commercial ethics boards to review their research. Ethics review boards aim to have at least one community member, a role for which advocates can apply.

Tasks and Skills:  PRAs review clinical trial designs with an eye to patient safety and ethical treatment; become familiar with laws and regulations on research. Usually requires training specified by the ethics board. (In the USA, ethics boards are called IRBs, short for Institutional or Independent Review Boards.)

Medical Society Committee

Advocates who are society members may apply to join a committee, or sometimes are requested to join.

 

Tasks and Skills:  PRAs collaboratively update treatment guidelines with clinicians and researchers; offer written/video perspective on impact of new research; help plan agenda and patient presentations to medical conferences.

Journal Peer Reviewer

Advocates may be invited to be a reviewer by the journal, or may apply to become a reviewer.

 

Tasks and Skills:  PRAs read scientific articles prior to acceptance for publication; provide feedback from the patient perspective on the article's topic, research design and methods, analysis, conclusions, and impact the paper might have for the patient community.

Scientific Article Co-Author

Advocates may be invited to co-author a paper, or may initiate an effort to write a paper with a team.

 

Tasks and Skills:  PRAs communicate verbally and in writing with clinicians and researchers; read and understand journal articles; offer brief examples of relevant patient experiences.

Research Team Patient Advisor

Patient advisors do not conduct research, but they do offer commentary.
 

Tasks and Skills:  PRAs attend presentations on research projects; provide patient perspective to researchers in advisory role; comment on potential impact of projects on patients and family members.

External Advisory Panel (EAP) Member

These include experts in a field who have been invited by a research team to critique a program or funding proposal. 

Tasks and Skills:  PRAs provide peer review by commenting on quality of scientific methods, innovation, potential impact of the research, possible challenges, and how the project might be perceived by funders, regulators, potential study participants, and the patient community.

Patient-Driven Research Team Member

Research team members are active participants in designing and implementing research.

 

Tasks and Skills:  PRAs collaborate with patients and scientists to determine which research question to answer, what data to collect to answer the question, how to structure the project and recruit participants, and how to share results of the study with the community.

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