Why we should always be there

By Anna Oliva, Acción Psoriasis

Increasingly, patients and patients’ organizations have become leading change agents in health. With more frequent patient engagement in the decision-making process, both in the public health care arena and in the pharmaceutical industry sector, our voice has come to influence major decisions affecting us.

The patient voice is increasingly being heard in the field of capacity-building and health training. It is important that our voice and vision is present in all sectors of global healthcare service provision and training.

In November 2016, Acción Psoriasis had the opportunity to participate, as representatives of IAPO, in the European Healthcare Industry Training: Compliance Certification Program (EHIT), organized by the Seton Hall University School of Law. It's a program attended by legal, regulatory and compliance professionals and advisors working within the European pharmaceutical, biotech and medical device industries.

For the first time, EHIT had a patient organization representative participating in one of their training programs. We participated in the workshop: Industry Interactions with Patient Organizations. It was an interesting workshop in which the European pharmaceutical companies and their representatives covering different areas like research, regulation, patient safety and quality shared their vision of how to establish relations with the patient organizations. We shared IAPO’s vision on patient-centered health care and industry collaboration and our experience in developing relationships with the industry.

The topic generated a lot of debate and we discussed who we can collaborate maintaining the independence of patient associations, developing trust between patients organizations and pharmaceutical industry, and how to work on common projects. The most important discussion was on how to formalize this collaboration. What shape should it take? Do we need a legal approach in which this relationship is formalized in a memorandum of understanding, contracts, grants and donations. At the moment IAPO has a guiding Consensus Framework of Ethical Collaboration with the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA). The World Health Organization also has a Framework of engagement with non-State actors. 

The workshop heard that the pharmaceutical industry has developed high standards and is affected by national and regional policy and laws that shape their collaboration practice.  However, it is now very important for the industry to know how patients want to shape future collaboration.

EHIT believes that such joint training programmes and interventions benefit all participants and help patient organizations to shape the training and development of managers and decision-makers within the pharmaceutical industry of Europe. It is important that the patient voice is brought into this training so that our needs shape the aims and objectives future pharmaceutical industry strategy and policy.

The meeting concluded with unanimous support for such event and noted that it had benefited all participants. It was a great success and something that will be repeated in the future. It is for this reason that EHIT believes that IAPO should be present in more of these forums through local members to promote our vision as patients

Finally, we would like to thank IAPO for asking Acción Psoriasis to represent the patients’ organizations. It was an honour for us.