Why Collaborating With Support Organizations is so Important for Clinical Research
Advancements in medical science research have been critically important for the improvement of healthcare. They have helped make progress in prevention, care, and treatment of people living with diseases. This progress could not have been made without the participation of not only physicians and patients but patient advocates and support organizations as well.
Researchers and patient advocates share a common goal of conquering a life-threatening disease first and foremost. From there, several avenues open up by which the collaboration between these groups help in developing policies and processes that make a cure possible. These involve answering questions that advance patient care and improve quality of life.
Research-patient advocacy collaboration has significantly improved over the past decade. Patient advocates are now viewed as an integral part of the scientific peer-review process. The FDA requires institutions such as an Ethics Review Board (ERB) or IRB to include at least one member who is not affiliated with the specific institution and solely represents the perspective of research participants. Advocates are increasingly serving on advisory boards and committees in the biopharma industry and aiding sponsors in developing patient-friendly clinical trial protocols. The idea isn’t for the “science” to be affected by the patients but just for the patients’ voice to be heard. Patient participation in these clinical studies will only occur if the patients are provided with resources that makes their journey with the disease less complicated. Patient advocates and support organizations are key towards educating patients and their families about the disease, why clinical trials are important and some may provide resources such as transportation and lodging to ease a patient’s process of participating in a clinical trial.
Health research funding organizations continue to make significant contributions in fundraising activities for research. There are innumerable examples of support organizations raising money for research through various events around the world. Viergever and Hendriks (2016) provide great insights on the main public and philanthropic funders of health research globally.
The 10 largest funding organizations together funded research for $37.1 billion, constituting 40% of all public and philanthropic health research spending globally. The largest funder was the United States National Institutes of Health ($26.1 billion), followed by the European Commission ($3.7 billion), and the United Kingdom Medical Research Council ($1.3 billion). The largest philanthropic funder was the Wellcome Trust ($909.1 million), the largest funder of health research through official development assistance was USAID ($186.4 million), and the largest multilateral funder was the World Health Organization ($135.0 million).” (Veirgever & Hendriks, 2016)
Despite continued progress in collaboration between researchers and patient advocacy groups there is still room for improvement. Many issues still plague the clinical research industry such as low patient participation in clinical trials, patient diversity, patient burdens in clinical trials, consent forms etc. All sides must continue to engage in joint-efforts to solve these key issues. Patient advocates should continue to improve their “scientific” knowledge in order to effectively communicate with the research community and strengthen relationships with both patients and researchers. Researchers must continue to seek advocacy as valuable resource in driving patient awareness of research.
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Post by Hamza Khan -
Hamza Khan is a Clinical Research Associate in the complex field of oncology clinical research. He serves as a liaison between US biotech sponsors and Canadian investigators and manages all operational aspects of a clinical study from site selection, implementation, monitoring and closure of study activities. He is extremely passionate about drug discovery and development, increasing clinical trial awareness and eliminating hurdles faced by minorities when it comes to clinical trials. He holds MSc. Neuroscience and BSc.H Life Sciences from Queen's University, Canada.