Partnership with patients

This topic was presented by Ingrid Klingmann, EFGCP (European Forum for Good Clinical Practice) during the 14th National Conference of ACRP (Association of Clinical Research Professionals), held in Brussels on November 25 2011.

The basic concept is that by partnering with Patients Organizations (PO), pharmaceutical sponsors could develop their new medicinal products faster and at lower costs through improved patient recruitment and retention:

  • faster, more reliable access to patients
  • better understandable patient information sheets
  • protocols better adapted to clinical practice and patient needs
  • better compliance with protocol requirements
  • more reliable safety information
  • improved image of clinical trials.

On the other side, PO could better serve their members thanks to :

  • more understandable information on the disease and treatment options
  • opportunities to meet experts and ask questions
  • more competent consulting by PO staff trained in clinical trial methodology
  • more professional organisation/dedicated staff to handle the PO tasks and increase awareness of existence due to stable financial conditions.

Investigators could also benefit from such partnership. They could increase patient enrolment and retention:

  • faster, more reliable access to suitable patients
  • better understandable patient information sheets
  • shorter, more focused information process
  • protocols better adapted to patient needs.
  • Investigators could also improve the quality of their data, thanks to more reliable safety information and better compliance with protocol requirements.
    European initiatives in that area include :

    • PatientPartner, a FP7-funded EU project to identify the patients’ needs for partnership in the clinical trials context
    • EUPATI (European Patients’ Academy on Therapeutic Innovation), an Innovative Medicines Initiative project starting in February 2012

    Last update: Tuesday, January 17, 2012
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