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Patient organisation focus: IAPO

Last Update 06/04/2021

Jo Groves is CEO of the International Alliance of Patients’ Organizations (IAPO).  We talked to Jo about how IAPO are supporting patient organisations at a global level and what they hope to achieve in the future.

Can you tell us about IAPO?

IAPO was founded in 1999 by 38 patient groups. We are unique as we are the only global alliance representing patients of all nationalities across all disease areas at the global level.

Our members are patients’ organisations working at the international, regional, national and local levels to represent and support patients, their families and carers

Our aim is to facilitate effective exchange between patient groups and to develop patient-centred healthcare at all levels.

Our mission is to help patients’ organisations build partnerships to maximise their impact through working together; to advocate on behalf of patient groups to influence health agendas across the globe; and to build cross-sector alliances with all stakeholders from health professionals to industry to policymakers.

How did you become involved in the organisation?

I joined as the Policy and External Affairs Director in 2004 and I became CEO in 2007.  I am a scientist by background and I’ve always been passionate about the good that medicine can bring. I believe that this can be most effective when appropriately introduced. The only way this can be done is to involve patients. It was this belief that attracted me to working with IAPO.

What are your big milestones this year?

This year marks the final year of our 5-year strategic plan, which has seen us increase the global impact of the patient voice. We’re busy at the moment contracting for assessments of this impact and developing our plan for the next few years. Some key achievements over the last few years include increasing our membership to 225 members in over 60 countries and becoming a partner organisation of the World Health Organization (WHO) with whom we have had official relations since 2007.

Our key milestone this year is our biennial Global Patients Congress, which took place last month.

Can you tell us about your annual congress?

This year’s theme was on access to healthcare – this remains the number one issue for members and it is a priority for WHO. There is a move towards this at the moment and we want to ensure that this move includes the right input from the patient perspective. The Congress provided the opportunity to have one dedicated day with our patient organisation members, where we developed our position and what we will stand for. The second and third days provided the opportunity to invite other stakeholders to discuss this position in more detail and how we can move it forward. It is a unique opportunity to explore what universal health coverage means from a patient perspective and its potential to improve health for all.

What are the key challenges you face over the next year?

There are always challenges in the work we do. At the patient level, there are a number of problems our members often face, such as access to healthcare and discrimination in healthcare.

For us, a key area is ensuring that theory is put into practice. There is a lot of discussion at the moment about improving self-management of conditions and facilitating shared-decision making, but we would question whether this is really understood. In the worst case scenario, patient input is often not supported but, even when it is, patients are often invited in at the end of the process, rather than from the start.

We need to have a commitment to education and training of patients and also education of healthcare professionals. Even if patients aren’t experts in science or research, they are experts in how their condition affects their lives and as such, their input is just as valid.

What changes would you like to see in the future regarding patient-centred healthcare?

Our overall goal would be to see universal health coverage for all. However, I also think more research is needed to show us which models for patient input are the most effective. I would like to see patients being involved from the start of the process, rather than just at the end of a project to review the outcomes.

What are you most proud of in your organisation?

It’s amazing to see the patient groups we work with in different countries and the dedication they have to their cause. It is truly inspiring and I feel proud to work with them.

I’m also proud that, as an organisation, we facilitate patient groups from many countries, working on many different conditions, to talk to each other and identify common ground. This really comes together at our Congress and it’s great to see what a powerful tool this kind of network can be.

Is there anything else you’d like to share with our readers?

I would like to highlight the importance of working together, not just on a national scale, but at a local, regional, national, European and global scale. If we can engage together, patients can truly have a voice in healthcare. 

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