Thursday, June 20, 2013

RESPECT opens doors to partnerships with patients

Recently in Europe, Gothenburg University of Sweden's Institute of Clinical Sciences at the Sahlgrenska Academy took time to look at pediatric clinical trials and how the lack of them done specifically for children could be changed. With statistics like 50% of the medical devices used for children have never been tested in their age group or the fact that many medications used are off label and it's up to doctors do judge the right amount of dosage, they decided to figure out what would encourage these patients to become more involved in clinical trials.

They set out by asking European communities through surveys and interviews these questions:
  • + How can paediatric patients be better mobilised and empowered?
  • + How can they get the clinical outcomes that really matter to them?
  • + And, how can their needs be integrated into clinical trials?
What they found was that the children needed to feel involved and empowered by the

What they found was that with children, they valued self-determination through active involvement; accountability and transparency; cooperation and mutual respect; and lastly knowledge and access to information.

According to Cordis, they've reached their major goal through this initiative - they've figured out how to effectively communicate with the key stakeholders in childrens' clinical trials on their terms.  They've also found that two way communication and participation with the patients leads to greater involvement in clinical trials.

This fall at the Clinical Collaboration Congress, much of the focus is on how to better work with all partners in the clinical trial process, including the patient, like the chlidrens' participation in their own clinical trials.   During the session Leveraging the Voice of the Patient: Collaborate with Patient
Organizations in Orphan Drug Development, Andrew Jablonski, CEO, Short Bowel Syndrome Foundation will address how they've worked with a small patient population to both encourage clinical trial participation.  For more information on this session and the rest of the program, download the agenda.  If you'd like to join Jablonski for this session, as a reader of this blog when you register to join us and mention XP1825BLOG, you'll save 15% off the standard rate.  

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