Special Interest Groups - ISoP Patient Engagement Group

ISoP Patient Engagement Group

Empower patients to enhance safety

Background:

The role of the patient in pharmacovigilance is key. The need for early involvement of the patient in the cycle of drug development is widely recognised, and direct patient reporting of ADRs is encouraged at many levels. This is very important as there are many barriers to safe medicine use, which lead to poor adherence, overuse, or misuse:

•Lack of understanding of the disease condition and the treatment choices by the patients.
•Ineffective communication between HCPs and the patients.
•Limited collaboration between the pharma industry, regulatory and the patients or their representatives, which led to inactive listening to the patient’s needs and challenges.

There is an urgent demand to work closely with the patient organizations to enhance the listening to patients, understand their challenges, and the importance of adherence to the treatment plan; consequently, patients will be able to avoid medication errors, manage the disease and reduce the adverse events incidents.
In addition, it is essential to help the patient organizations to leverage the knowledge of the patient on how to accept and manage adverse events rather than try to avoid them. Thus, we need to establish a transparent channel of communication between the patients and healthcare professionals, the pharma industry, regulators, and research institutions.
There is a big demand to enhance the communication between the patients and healthcare professionals, especially in LMICs.

Thus, ISoP Patient Engagement Group (ISoP PatEG) is needed.

The ISoP Patient Engagement SIG was formally launched during the ISoP General Assembly at the 20th annual meeting of ISoP in November 2021.

Vision:

Empower the patient to be an integral part of the patient’s safety and safe use of medicines.

Mission:

• Create an ISoP Patient Engagement Group to shape the future of the patient’s involvement in pharmacovigilance.
• Create a patient advocacy representative in each chapter to work closely with patient organizations and act as a coordinator of the patient to support the vision of the ISoP PatEG.
• Develop a strategy to support the voice of the patient to improve safety, disease management, and treatment adherence.
• Support the patient to be one of the key players in the decision-making in the drug development and treatment plan.

Guidelines on how to be a member/representative in ISoP PatEG:

  • ISoP member more than three years
  • Passion about supporting the patient utilizing different tools and channels.
  • Have a connection with the patient organizations/societies in the country or the region affiliate to.
  • If you would like to join the group, please submit the application form below to evaluate the eligibility criteria: https://my.forms.app/form/6197c0af7d2e520c5414b674

Leaders of the group are:
Dr. Mayada Alkhakany
Dr. Manal Younus
isoppatienteg@gmail.com
Advisor Board Committee to be announced later.

Follow us on social media:
https://twitter.com/PatientegISoP
https://www.facebook.com/ISoP-Patient-Engagement-Group-103127862204528/
https://www.linkedin.com/company/isop-patient-engagement-group