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IAPO’s founders brought together 40 patients’ organizations that supported the formation of a global network. These patient advocates discussed the feasibility of a global alliance and elected a taskforce of volunteers to prepare the establishment of a global organization.
In 1998, the taskforce decided upon the name, the International Alliance of Patients’ Organizations (IAPO). The taskforce reviewed the challenges that they would need to address and discussed and made plans to establish IAPO. Fundamental components required for the alliance were:
- A clear vision
- Planning
- Member/constituent involvement
- Robust governance structures
- Financial stability
IAPO’s founding Board Members were patient representatives from Europe, the USA and Uruguay. In consultation with the network’s members, IAPO’s vision, mission, statutes and by-laws were developed. These governing documents ensure that IAPO has a clear structure.
To establish a governance structure for an alliance the following questions can be considered:
- Should the network remain informal or register legally?
- What should be in the governing document?
- How can transparency and accountability be ensured?
- What skills are needed on the board?
- Does the board need to be regionally/geographically representative?
Answering these questions enabled IAPO to move forward as an independent, patient-led organization, to promote patient-centred healthcare worldwide. Member involvement has been vital to IAPO’s success, as it is IAPO’s members who make-up the international alliance. Emerging alliances should be able to answer:
- Who are your members?
- Where are they?
- How do you serve them?
- Is your role to support them?
- Are a maximum number of members an important goal?
Building an alliance takes time, perseverance and vision. The benefits of a joint voice include the power of numbers in advocacy and the invaluable support of sharing experiences. A clear mission to build patient-centred healthcare, strong governance, fundraising, strategic and member involvement structures and a long-term plan with small, achievable short-term goals, have been fundamental to IAPO’s success.
IAPO has supported the development of national alliances of patients’ organizations in Uganda, the Philippines and Malawi and is currently offering support to members and other patients’ organizations in Ghana, Zambia, Nigeria and Mexico to form alliances. IAPO offers members support and information on forming networks and alliances, as well as a Twinning Programme in which you can partner with another IAPO member to gain knowledge for a particular project. For more information, contact Caroline Staffell, Membership and Engagement Manager at: caroline@patientsorganizations.org.
Links to resources:
IAPO Toolkit: Working with Partners and Stakeholders
The Patients’ Exchange Collaboration Resource Share
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At the beginning of 1998, a group of patient representatives came together with one vision in mind: An alliance of patients’ organizations from around the world across all disease areas, to speak as one voice of, rather than for, patients. Sixteen years on, this alliance is IAPO with over 210 patients’ organizations from all world regions. So how did IAPO develop from a group of like-minded patient representatives into a global alliance? 
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