Are you passionate about improving access to research, fostering better care and creating a positive impact on clinical trials and guidelines for cancer?
National Cancer Grid & PatientsEngage are building a team of Patient Advocates to work towards advancing patient and public involvement in research and guideline development in India for cancer care. A program is being organized to train and empower patient advocates. This course will be conducted over 4 months with both virtual and in-person sessions at the end of the program in March 2025.
If you are interested to learn more about this or wish to join the training program please send us a e-mail at editor@patientsengage.com
Note: This is the first batch and we aim to learn from this and have wider representation from across India to ensure that there are any language or social barriers for future batches.
What is a Research Patient Advocate?
According to the National Cancer Institute, a research advocate is defined as “ A person who serves as a link between patients and scientific researchers. Research advocates help patients understand scientific information and research findings that may help them. They may also bring a patient perspective on research activities to scientific advisory boards and committees. For example, research advocates use their own experiences and the experiences of patients to work with researchers to help develop clinical trials that are safe and meet the needs of patients. They also help teach patients and their families about clinical trials and recruit patients to clinical trials.”
What is a research patient advocate expected to do?
They are expected to proactively participate and contribute in research or guideline committees. A patient representative or advocate plays a vital role in ensuring that clinical trials and guidelines are patient-centered, relevant, and practical. Their contributions help to align healthcare practices with patient needs, ultimately leading to better health outcomes and enhanced patient satisfaction.
Criteria for selection will include the following:
- Lived experience of cancer as a patient or a family caregiver.
- Ability to read and understand English.
- Willingness/ ability to read Clinical Trial or Guideline related documents.
- Willingness and ability to read and understand scientific documents (with assistance) and documents that provide economic/social context.
- Willingness to understand the needs of the community they represent
- Ability to use tools like Whatsapp, Zoom, Email, MS Word, MS Excel.
- Able to spend about 2-3 hours per week or 8-10 hours per month from Nov 2024 March 2025 for virtual training and briefing/ mentoring sessions.
- Willingness to travel to Lonavala for the training and workshop in March 2025 for 4-5 days
- Willing to be part of 1 research or guidelines committee a year (6-10 hours) after the training
- Previous experience in patient navigation or advocacy – desirable, not mandatory.
What does the training entail?
Training will entail online and offline classes on several modules aimed to prepare the participant to become a patient advocate. Attendance is compulsory in order to complete the training. Certificate will be provided upon successful completion.
What is the time commitment required after the training?
The research/guideline committee that you become a part of will intimate you regarding the timeline of the project. Specific dates and any changes are shared in advance by the research/guideline committee along with details on how often they will meet and the type(s) of meetings (offline or online) that will occur.
How to contact us?
If you are interested in participating, email us at editor@patientsengage.com with your full name, and an introduction on why you would like to be a Patient Advocate and how you can contribute. Please add Cancer Patient Advocate Training in the subject line.
