Firma Clinical Research, a niche service provider, is partnering with The Myositis Association (TMA) on a multi-faceted project to better integrate the experience of patients into the training of clinical trial investigators and support providers.
The project, entitled “Integrating the ‘Lived Experience’ of the Patient into the Training of Clinical Trial Investigators & Support Providers,” was recently presented during the RARE Patient Advocacy Summit in San Diego, California by Michael Keens, Chief Operating Officer, Firma Clinical Research, and Mary McGowan, Executive Director, TMA.
The project (click HERE to see poster) was launched after Firma and TMA identified a lack of general education on the patient “lived experience” by support providers in a myositis clinical trial. The project began with Firma Clinical and TMA collaborating on the development of the pilot supplemental training materials to bring nursing clinical investigators and providers a better understanding of myositis diseases and the everyday challenges faced by patients and care partners. This was followed by a survey of patients and care partners at the 2019 TMA annual patient conference. Through the survey, myositis patients and care partners provided feedback on their experience living with the disease. This survey will be combined with a survey of the home health providers as to what features of the pilot supplemental training materials they found helpful and what additional information they would like to have.
These surveys will be used to improve the pilot supplemental protocol training and create a comprehensive and accurately focused training platform that will result in increased provider knowledge and the likelihood of a more positive home health experience for clinical trial patients.
“The broadened perspective of the patient and the care partner provides important insight into clinical trial patient support for our home health professionals,” said Keens. “Combining the ‘lived patient experience’ into standard trial protocol training for our home health providers is an example of how Firma distinguishes itself in the clinical trial industry, moves patient centricity from talk into action, and ensures patients receive the best experience possible in their clinical trial home health visit.”
“Firma and The Myositis Association will compile the survey results from the home healthcare professionals and then realign training in order to better reflect the needs of patients and their care partners as they engage in clinical trials,” said McGowan. “It is essential in drug development that we understand the patient and care partner perspective and needs, as well as the impact of the disease and therapies on the patient both physically and psychosocially. Firma is committed to patient centricity in clinical trials, and we are pleased to work with them on this project.”
Firma plans to commence similar enhanced training programs in other disease conditions, where embraced by sponsors and advocacy organizations and deemed of benefit to clinical trial patients.
“There’s a great opportunity to apply this approach to other clinical trials to enhance patient benefit and trial participation. TMA’s robust and incredibly engaged community of patients and care partners has made them international leaders in this space. TMA has been a great partner in this initiative, and we look forward to applying a similar approach to benefit patients across multiple clinical trials and therapeutics areas,” said Keens.
About Firma Clinical Research
Firma is a niche service provider with a patient-centric approach to unlocking positive outcomes in the drug and medical device development process. Using an integrated suite of specialized solutions, Firma makes the clinical trials process easier and more valuable for patients and produces higher-quality data for sites and sponsors. For more information, visit the company at www.firmaclinicalresearch.com or follow Firma Clinical Research on Twitter or LinkedIn.
The Myositis Association (TMA) is the leading international nonprofit organization committed to the global community of people living with myositis, their care partners, family members and the medical community. TMA provides patient education and support, advocacy, physician education and research funding for myositis diseases. For more information on myositis and patient and care partner support, visit www.myositis.org and follow them on Facebook, Twitter and Linkedin.