IAPO member joins Council for International Organizations of Medical Sciences working group

IAPO Member, Regina Mariam Kamoga from Community Health and Information Network (CHAIN) in Uganda, shares her experience in joining the Council for International Organizations of Medical Sciences (CIOMS) working group aimed at involving patients in the development and safe use of medicines.

Gone are the days when patients were perceived as passive receivers of care. Increasingly they are being recognized as critical partners in healthcare. And indeed deliberate efforts are in place to make this a reality. In April 2018, CIOMS launched the Working Group XI on Patient Involvement in Development and Safe Use of Medicines.

The group is composed of participants from patient organizations, industry, regulators and academia, with potential additional representation from ethicists and healthcare professionals. These experts are working together to formulate pragmatic points for the optimal consideration of patient perspectives and preferences to support the safe and effective use of medicines throughout their lifecycle. Specific aspects of this involvement include: patient input to the development of medicines in areas of medical need; the collection and reporting of safety information; input to benefit–risk assessment; the use of technologies involving patients for safety communication between stakeholders including patients, healthcare professionals, pharmaceutical companies, regulators and academia.

I had the opportunity to participate in the 2nd working group meeting held on 23 - 24 October 2018 in Berlin (Germany) whose objective was to review and compare the draft outlines of chapters of the guideline, and agree on next steps in developing the draft guidance further. The representatives from patient organiations provided useful insights from the patient perspective which enriched the process. It was exciting to be in a meeting where patient involvement was prioritised.

This was my first time in all my over 12 years of patient advocacy to sit in a 2 day meeting where it was all about meaningful patient involvement! This is a welcome and timely move, especially at a time when WHO Global Patient Safety Challenge and the Third Global Ministerial Summit Tokyo Declaration on Patient Safety recognise the role of engaging patients and families in the delivery of safe and quality care, and in all aspects of healthcare.

Patients and families acknowledge that access to a sustained supply of good-quality medicines is a critical part of addressing both the communicable and non-communicable disease epidemics and the long-term quality of life and productivity of people throughout the world. And with the introduction of new medicines and medical technologies, it is critical that patients are part of these processes not only because they can provide critical input and feedback but also because, when things go wrong, they suffer harm. So the move by CIOMS is highly appreciated.