Have you ever wondered who protects your best interests during a clinical trial? Enter the patient advocate—your guide, supporter, and voice throughout the research process.
What is a Patient Advocate?
A patient advocate is a specialist who helps patients involved in clinical trials. They serve as a link between the research team and the participants, helping to protect patients’ rights and safety, as well as targeting their well-being throughout the research effort.
Core Competencies of a Patient Advocate
Patient advocates are a varied group, but they have some key characteristics in common:
- Strong communication skills
- Empathy and compassion
- Familiarity with medical and legal terminology
- Familiarity with the clinical research process
Many patient advocates themselves have lived experience with health conditions or experiences with the healthcare system that provide them with valuable insight into the needs and concerns of patients.
Patient Advocates Role in Clinical Trials
There are several roles that patient advocates play in a clinical study. Below are some of their main responsibilities:
- Advocating for Patient Rights and Safety
- Supporting the creation of transparent and clear informed consent
- Explaining risk to study participants and any of the patients support group.
- Translating scientific language into normal English
- Assisting patients to understand the purpose, procedures, and potential outcomes of the trial
- Answering questions about treatments, side effects, and follow-up care
- Being ‘that’ person you can turn to when its gets tough….and it will get tough
- Helping patients considering a trial work out the Pros and cons of participation
- Facilitating communication between patients and research staff
- Enabling patients to say what’s bothering them and ask questions
- Making sure that the feedback from patients is integrated into the study design and conduct
When Is Patient Advocacy Most Needed?
Patient advocates are useful throughout the entire trial process, but there are specific parts of a research study where patient advocates can be most helpful.
Recruitment Phase
- Assisting prospective participants in learning about the study requirements
- Supporting diverse representation in trial population
- Aiding patients to enrol in the study by addressing concerns that might deter them from joining
Informed Consent Process
- Checking for clear and thorough consent taking
- Educating patients on their rights and responsibilities
- Responding to inquiries regarding the study processes and possible dangers
Treatment Period
- Aiding in the management of a patients mental health when faced with side effects and complications
- Meeting the needs of the patient while in the hospital or at home which can be as simple as sitting down for a chat over a cup of coffee or tea – decaf of course
Follow-up Stage
- Supporting long-term monitoring and data collection
- Assisting patients with resuming care or finding alternative therapies if required
Challenges and Solutions
Patient advocacy is a necessity, of course, but like everything there are obstacles. Here are some obstacles I have encountered and tips to overcome common challenges:
- Offering Emotional Support While Keeping Professional Boundaries: Continuous education on professional standards and ethical issues related to counselling.
- Dealing With a Maze of Medical Information: Challenge involves keeping up with fast-paced medical research. Remedy includes frequent involvement in continuing education programs and working closely with the research team.
- Managing Patient Expectations: Challenge includes explaining to patients that involvement does not ensure treatment efficacy. Answer is open, transparent dialogue about what clinical trials are and what might happen.
- Meet Patients Where They Are: Challenge involves catching up with new cultural and socio-economic patients. Solution includes cultural competency training and cultivating a diverse team of advocates.
Unfortunately, the importance of patient advocates is often overlooked since it seems automatic, but patient advocates are integral to providing the voice of the patient to the research process and making sure your needs are addressed through clinical trials. They elevate the experience of participants, and they enhance the quality and impact of medical research.
If you think you might want to join a clinical trial, ask about the patient advocacy services they offer. Keep in mind, you are not only a subject in a study—you are an appreciated partner in the progress of medical knowledge and the enhancement of healthcare for everybody.
