Bridging Hope: Dr. Vanita Noronha Unveils the Vital Role of Advocacy in Shaping Cancer Research at Cancer Conclave 2024

Thank you so much Vivekji, Umeshji, Dr. Kumar Prabhash, and Dr. Vijay Patil for this opportunity. 

What is Patient Advocacy in Cancer Research

Patient advocacy in cancer research refers to the active involvement of patients, survivors, caregivers, and their advocates in various aspects of cancer research. This involvement encompasses a range of activities aimed at ensuring that the needs, perspectives, and priorities of those affected by cancer are considered and addressed throughout the research process. Patient advocacy in cancer research plays a crucial role in driving advancements in treatment, care, and support for individuals affected by cancer.

Who exactly is a Patient Advocate?

• A patient advocate is a person living with experience either as a patient with cancer/ cancer survivor or an informal caregiver /carer of a person with cancer who is engaged in advancing something larger for themselves and their community.
• This excludes paid professionals.

Why do patient advocates get engaged in cancer research?

Kimmie Ng and Candace Henley are the patient advocates discussing together across specialisms and the impact of the patient advocacy voice.  

Our experiences are all different but as a collective, we can share what works for the patient community, adding our thoughts to make sure it’s reliable and relevant. Representation is important, it gives the patient a voice, and a seat at the table and has shown that it’s as important as science. We have a Ph.D. in experience- that offers a valuable opportunity to share in and guide the work being done. 

What are the roles of a patient advocate in cancer research?

Patient advocates play crucial roles in cancer research, representing the interests, needs, and perspectives of patients, survivors, and caregivers. Their involvement helps to ensure that research efforts are patient-centered, inclusive, and ultimately more effective in addressing the challenges of cancer.

Advocates can contribute to all the following steps in the process –

• Formulate the research questions
• Identify patient concerns
• Increase participation in research
• Improving the patient consent form
• Provide feedback regarding whether various procedures or inclusion and exclusion criteria would be acceptable to patients
• Help obtain funding
• Continuous feedback during studies
• Dissemination of results

Patient advocates Engagement in Research

Patient advocates engage in research in various capacities, bringing their unique perspectives, experiences, and insights to the forefront of the research process. Their involvement is instrumental in ensuring that research efforts are patient-centered, inclusive, and ultimately more effective in addressing the needs of individuals affected by cancer. 

• Laboratory Research

Patient advocates can engage in laboratory research in several meaningful ways, contributing their unique perspectives and insights to scientific endeavors aimed at understanding and treating cancer. While laboratory research typically involves experimental work conducted in controlled settings, patient advocates can play pivotal roles in shaping research priorities, informing study design, and ensuring that the needs and perspectives of patients are considered throughout the research process. 

Conception 

• Identify a research question important to patients
• Give guidance on grant applications regarding the potential to positively impact patients
• Edit lay abstract
• Write a letter of support for the grant application
• Become a member of the research team

Conduct 

• Help researchers speak about their research to the public
• Look ahead to translation to the clinic
• Break down silos to allow collaborations
• Attend laboratory meetings
• Introduce researchers to community organizations

Completion

• Help write research summaries for the public
• Co-present research results with researcher
• Facilitate communication of research to patients and the community
• Participate in preparing and writing manuscripts

Clinical Research

Patient advocates play a crucial role in clinical research, which involves the study of medical interventions in humans. Their involvement ensures that research efforts are patient-centered, ethical, and responsive to the needs and perspectives of individuals affected by cancer.

Conception

• Identify clinical questions important to patients
• Give guidance on study design regarding patient burden
• Identify trial endpoints important to patients
• Review patient-reported outcome assessments
• Review protocols and consent forms

Conduct 

• Help define relevant patient populations
• Ensure inclusion of patients who may benefit
• Identify patient burdens to participation
• Help develop patient education materials
• Help identify ongoing barriers to accrual

Completion

• Highlight the importance of the study results for patients
• Help write study results summaries for the public
• Co-present study results with researchers
• Facilitate communication of study results to patients and the community
• Participate in preparing and writing manuscripts

Roles and Opportunities of Patient Advocates at Different Levels

The roles and opportunities of a patient advocate can vary depending on their level of experience and scientific understanding of patient diagnosis and medical conditions. At lower level, the patient becomes eligible enough to participate in clinical trials. And as the experience increases the advocate gets capable to contribute in various education portals and support groups.

Patient advocacy in framing research question

Patient advocacy plays a crucial role in framing research questions by ensuring that the priorities, concerns, and needs of patients and their caregivers are central to the research agenda including –

• The research question is one of the most important steps in doing research
• There is an interplay between the needs of a patient, the priority of the researcher, the priority of the funding agency, the priority of the institution, etc. which decides which research questions need to be taken forward
• Need to the patient should be the priority

Dr. Abhay Bang, when he returned from the United States his first priority was to work on sickle cell anemia. When he engaged with the locals he realized that maternal mortality was a huge problem in villages, and that’s when he started working on reducing infant and maternal mortality.

Our experience in involving patient advocates in research planning

Study Title: Geriatric Oncology multidomain intervention study to prevent Cognitive impairment among older Indian patients with cancer receiving chemotherapy: A randomized controlled trial (GoCog)

Refer for detailed info – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10550294/

Advantages of engaging patient advocates

Engaging patient advocates in cancer research, care, and advocacy offers numerous advantages that contribute to more patient-centered, effective, and equitable outcomes. 

It improves the critical aspects such as –

• Research feasibility
• Rigor
• Acceptability
• Relevance
• Quality
• Mutual Learning
• Building of new skills, knowledge, and skills by patients increases understanding of basic science research, and broadens the researcher’s perspectives. 
• Disseminating research findings, which improves communication with the public
• Improves the trust of the research community, thereby increasing the impact of the patient’s voice
• Challenges of engaging patient advocates include a perceived lack of scientific knowledge, which may be frustrating for both advocates and researchers
• Same patients are recruited for engagement who have been part of research with principal investigator/researcher
• Tokenistic approach

Issues with engagement

Challenges and opportunities for establishing relationships between advocates and researchers

Barrier #1

It is not always clear why patient advocates should be included in research

Short-term goal

Encourage granting agencies to require including patient advocates in grant applications and provide a statement about the value of these partnerships such as American Cancer Society(ACS), DOD.

Long-term goal

Perform a quantitative research project to demonstrate the value of patient advocates and researchers working together.

Barrier #2

Researchers are worried about saying the wrong thing

Short-term goal

Support spaces where open communication is encouraged.

Long-term goal

Create training programs for research scientists to learn how to work with patient advocates and communicate effectively.

Barrier #3

Researchers do not know how to begin with patient advocates

Short-term goal

Connect with patient advocates through Twitter and consider following social media chats.

Long-term goal

Develop a social media platform that would connect researchers and patient advocates nationwide.

The Benefits and Burdens of Patient Advocacy

Patient advocacy carries both benefits and burdens, reflecting the complexities of navigating healthcare systems, addressing disparities, and advocating for patient rights and well-being.

Refer to this link – https://ascopubs.org/doi/10.1200/JCO.2020.39.28_suppl.204

Why Training and Evaluation is necessary

Training and evaluation are essential for patient advocates to enhance their skills, knowledge, and effectiveness in advocating for patient rights, navigating healthcare systems, and driving positive change. 

Training

• Skill Development
• Knowledge Acquisition
• Legal and Ethical Understanding
• Empowerment
• Collaboration and Networking

Evaluation

• Assessment of Impact
• Quality Improvement
• Accountability
• Resource Allocation
• Learning and Adaptation

By investing in training and evaluation, advocates can enhance their impact, improve their effectiveness, and ultimately drive positive change in healthcare systems and policies.

Training and Evaluation by Different Organizations

Different organizations offer training and evaluation programs tailored to the needs of patient advocates, providing them with the skills, knowledge, and resources necessary to effectively advocate for patient rights and navigate healthcare systems. Here are examples of organizations that offer such programs –

• American Society of Clinical Oncology (ASCO)
• ASCO offers educational programs and resources for patient advocates, including the Patient Advocate Foundation’s (PAF) Patient Advocate Certificate Program, which provides training in advocacy skills, communication, and understanding of cancer care.

British Medical Journal (BMJ)

• BMJ offers training programs and resources for patient advocates through initiatives like BMJ Patient Partnership, which provides guidance and tools for patients and caregivers to engage with healthcare professionals, participate in decision-making, and advocate for their needs.

Fight Colorectal Cancer (Fight CRC)

• Fight CRC provides training and support for colorectal cancer advocates through programs like the Advocacy Training Program, which offers workshops, webinars, and resources on advocacy skills, policy issues, and grassroots organizing.
• Facing Our Risk of Cancer Empowered (FORCE)
• FORCE offers training and educational resources for individuals affected by hereditary breast and ovarian cancer through programs like the Peer Navigator Program, which provides training for peer support volunteers to provide guidance, information, and support to others facing similar challenges.
• Foundation for Ovarian Cancer Research (FOCR) 

Progress for Patients

• FOCR offers training and support for ovarian cancer advocates through initiatives like the Advocate Leader Program, which provides training in advocacy skills, policy issues, and research literacy to empower advocates to drive progress in ovarian cancer research and care.
• Patient-Centered Outcomes Research Institute (PCORI)
• PCORI offers training programs and resources for patient advocates engaged in patient-centered outcomes research (PCOR), including the PCORI Ambassador Program, which provides training and support for advocates to participate in research projects and initiatives.

Research Advocacy Network

• The Research Advocacy Network offers training and support for patient advocates involved in cancer research advocacy through programs like the Research Advocacy Training and Support (RATS) program, which provides training in research literacy, advocacy skills, and collaboration with researchers.

Conclusion

• Patient advocates need to be a part of cancer research
• They may be involved in all aspects of cancer research
• This will involve training and education
• This will require an evaluation of the impact on research
• In India, we have very few patient advocates
• We need to actively engage to improve their involvement

Thank you so much….

Learn More – Watch the full video