Author + information
He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.
—Sir William Osler (1)
Heart failure researchers are an extraordinary group of dedicated, passionate scientists who work diligently to find ways to help us to live better and longer lives. Development of clinical trials from concept to actualization of intervention or realization of trial failure is a long, arduous process. However, I think there is an opportunity to increase and improve the clinical trial development process by adding patients to the team as partners in the process beginning with the inception of ideas. Although I have unabashed respect for your expertise in the science of heart failure, I believe there is expertise in the patient population that will enhance trial development and execution and improve accrual potential by viewing and offering feedback and suggestions on the concept and study from the patient vantage throughout the process.
Patient expertise is in the experience of heart failure, the daily ins and outs of living with and dying from this pernicious set of diseases. Patients can articulate the experience, expectations, and needs of the patient as part of the research development in a collaborative way that enhances the quality and viability of the study. We know intimately what patients are willing and able to do in the service of science and better care, we see the barriers to participation from the patient perspective. Patient presence at the research table changes the discussion and planning meaningfully and keeps the patient-centered focus front and center. Sometimes we have useful things to say, and sometimes we are just the silent “elephant on the table.”
Respectful discourse opens new avenues of thought and consideration. Some of the areas about which patient partners bring a unique perspective include the following:
• Is the question being asked important to patients?
• Is the question patient-centered?
• Are the activities/procedures being asked of patients reasonable from a patient perspective?
• Are you selecting a study population that reflects the affected population?
• Is your lay language section truly lay language?
• Is your informed consent truly informing to the patient?
If you are not partnering with patients in developing your research protocols, I hope you will reconsider and invite patient partners to the research table. Yes, there is training involved, but the essential expertise is there and important. Together we can move patient-centered science and care forward.
Please note: The author has reported that she has no relationships relevant to the contents of this paper to disclose.
- 2017 American College of Cardiology Foundation
- ↵Brainyquotes. Sir William Osler quotations. Available at: https://www.brainyquote.com/quotes/quotes/w/williamosl393617.html. Accessed January 6, 2017.