In their unique role as gatherers of diverse people and organizations from different ages, backgrounds and professional experience, associations are the best advocates for the importance of DEI practices in driving transformation for a more sustainable world. Even more so when the champions of this transformation are determined women who know all too well what it means to fight for the right of equity, both on a personal and on a professional level.
A COMMON APPROACH
The ‘DEI trend’ is actually a fundamental shift in our approach to life and work without which societies cannot move forward (at least not in the right sustainable direction). Looking into the medical sector, the equity is key to research and patient treatment. The objective is the same in all sub-sectors of medicine: equal, accessible and advanced healthcare for all by means of engaging the whole care eco-system.
“RDI’s end goal is the delivery of high-quality health and social care to everybody around the world, across all countries and across all rare diseases. Equity facilitates equal opportunity to attain the greatest level of health and well-being – Leaving No One Behind,” says Flaminia Macchia, Former Executive Director, Rare Diseases International (RDI).
This common target is the guiding light for medical associations to empower patients and provoke political change. “Our approach is truly holistic and totally embracing equity: by raising the voice of patients from the grassroots and reaching healthcare professionals and high-level policymakers, we enable evidence-based policymaking and subsequently the improvement of healthcare services provided to patients. As a result, patients live longer and better,” says Androulla Eleftheriou, Executive Director, Thalassaemia International Federation (TIF).
Inclusion in medical cases is more than just equal treatment. Sharon Ashton, Open Academy & Events Director, EURORDIS- Rare Diseases Europe, says: “We strive to give people living with a rare disease more than a voice, we give them a seat at the table, as equal peers alongside healthcare professionals, companies and policy- makers, to design solutions and make informed decisions about how research is shaped, data is collected, how medicines are developed, and care pathways are designed.”
NOT A SIMPLE TASK
Even though the heart of these advocates is in the right place, the obstacles to reach the desired goal are many. Some are unforeseen and hard to overcome as they have nothing to do with the sector itself. “Being international naturally means advocating for equity, but it also means we face challenges that affect the globe. They are linked to the economy hit by external elements, such as COVID19 and the war in Ukraine: costs of services and interest of policymakers in EU health are a few examples,” says Catherine Hartmann, Executive Director, Medical Nutrition International Industry.
Others have to do with lack of awareness and limited funds, as Eleftheriou explains: “One of the major challenges we face is the lack of political will or financial resources to develop the infrastructure needed for service improvement, including disease-specific registries. Another major issue is the absence of patient associations in countries affected by the disease. This weakens the patients’ voice in those countries and hinders the work of TIF.”
RESULTS COME FROM DRIVEN WOMEN
Overcoming such hurdles is what these women have set out to do in ways that differ from one organization to another, depending on the needs and the resources available, but always with an open mind. Ariane Brusselmans, Director of Conferences, International AIDS Society, “the first thing to do is to set the DEI criteria for your organization, try measure where you stand and where you want to be. It will be very different depending on the sector that you are working in.”
In fact, change starts from within one’s own organization in order to then be able to help others. Ashton describes their own actions: “We recently undertook a literature review and produced an internal report with recommendations on how to make our events, both in-person and online, more accessible for neurodiverse people and those living with disabilities.”
As always, collaboration and dialogue are essential. “I have included in our DEI initiatives people from around the world of a wide range of age groups and both men and women, so that we in Asia can benefit from not only regional but also global perspectives. I have developed partnerships with organizations from within the region, but also global bodies like the UN and WHO. We encourage and promote other organizations too, and that openness has added strength to our organization,” says Ruby Panwankar, Executive Director, Asia Pacific Association of Allergy Asthma and Clinical Immunology (APAAACI).
Collaboration opens the door for larger-scale actions like the campaign Macchia took part in. “RDI led the international campaign towards the first-ever United Nations General Assembly Resolution on PLWRD and their families which recognizes that PLWRD may require specific action and support to enjoy equal access to benefits and services in education, employment, and health, and to promote their full, equal, and meaningful participation in society.”
Listed here is but a mere sample of the ambitious actions undertaken by Women Who Advance Associations. The wave of diversity, equity, and inclusion is only getting bigger and the female touch is doing wonders to get society the perspective it needs for a more sustainable future.