“The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.”
Alma Ata Declaration – Principle IV (1978, WHO)
In 1978, the Alma Ata Declaration brought strong political commitment to a common vision to protect and promote the health of all people. The Declaration showed a clear mandate for patient engagement in both healthcare policy development and practice. Thirty-five years on, however, clearly this is not a reality in many situations, countries and contexts. What is acknowledged is that no one stakeholder can address the significant healthcare challenges of the 21st century. If we are going to provide affordable, quality and accessible healthcare for all which truly meets patients’ needs then we need a team effort and patients must be part of that team.
Valuabel role of patients’ organizations
What is often not well recognised or understood is what patients’ organizations can contribute and how they can be engaged in health policy decisions. For healthcare systems to be designed to be able to meet patients’ needs the involvement of patients and those that represent patients – patients’ organizations is essential.
A fundamental principle of patient-centred healthcare, patient engagement, requires that patients are supported to be involved in their own healthcare and that patients and patients’ organizations are educated and empowered to contribute to decision-making processes (As outlined in IAPO’s Declaration on Patient-Centred Healthcare).
However, patients are often not at the centre of policy discussions and their contribution not always seen as integral to finding and implementing solutions to those health challenges we face globally.
Patients’ organizations have a valuable role to play in all areas of healthcare. They not only deliver significant levels of essential information, support and services to patients but they can contribute to healthcare policies based on:
- Their experience and knowledge of the issues patients and patient communities are facing
- Their ability to consult with and represent large numbers of patients views
- Their ability to access patients who can be involved in processes so that their individual or collective voices are heard
As the international community considers actions for the post 2015 development agenda which will follow from the Millennium Development Goals, the global patients’ movement is in a better position than ever before to contribute. The power of patients’ organizations globally is increasing as they become better connected, well educated and empowered to be in a position to engage.
Patient Solidarity Day
This empowerment is closely linked with patient solidarity which can be seen in a recent initiative in Africa. On 30 October 2013 IAPO members in Africa marked the first regional Patient Solidarity Day (www.patientsolidarityday.org) across Africa. This initiative has been developed by the steering committee to consolidate the work of IAPO members and provide an opportunity to build country partnerships, networks and multi-stakeholder collaboration towards achieving patient-centred healthcare in Africa.
With the theme «Improve lives through patient-centred healthcare», Patient Solidarity Day marked a day when the patient voice was raised and the needs of patients across Africa were highlighted. Patients’ organizations partnered with the WHO African Regional Office, national Ministries of Health, health professional organizations and others to recognize patients as equal partners. The day was celebrated with activities which included public commitments to IAPO’s Declaration on Patient-Centred Healthcare, community outreach events providing screening, counselling and education on health issues, workshops, performances and exhibitions.
The first Patient Solidarity Day was held in Kenya in 2011 and has grown to include ten African countries in 2013 (Cameroon, Ghana, Kenya, Liberia, Malawi, Nigeria, South Africa, Uganda, Zambia, and Zimbabwe).
Patient Solidarity Day shows the power of patients’ organizations as a movement towards collective education and empowerment and to take steps towards further meaningful contributions of patients to national health policy discussions. We need the healthcare system to be ready to engage in this future.
Chief Executive Officer, International Alliance of Patients’ Organizations