On June 17th more than 110 particiants (25% more than registered) attended the First Patient Experience Congress in Spain, organizaed by the Institute for Patient Experience. The event – supported by Mondragon Health and enterprises from the Mondragon Cooperative Group, the FIPSE Foundation, Merck and Disser – soon became trending topic on twitter with more than 300.000 impacts. 
For sure a paticipant’s voice will describe better the content’s of the congress, since as co-organizator I am biased. This is why I asked Estefanía Arribas, nurse, trainer and researcher at the University Valladolid, to write this post.
Estefania Arribas Leal is considered, curious, creative and transformative. As a clinical nurse she has worked in multiple health care settings in Spain and the UK. She  also worked as complaint manager and clinical consultant in quality departments.  



Every congress is born out of a series of conversations between people interested in its celebration. Then they begin to share responsibilities, make endless to do lists, set up meetings, send emails, contact potential speakers… The work of organizing a congress is huge. Those who have ever done, they know. For the Institute for Patient Experience all these efforts were materialized on June 17th 2016, when the earlier guests began to arrive and the first posters started seeking their space on the walls of the accreditation room. From the first moment, guests began to greet after recognizing each other and we could feel the joyful expectation that happens when you know you’re about to share an exceptional moment. For exceptional is participating in this first Congress created with all the interest and the desire to share something good. For this purpose, all efforts, all the professionalism and good work of the organizers were worth enough.

First of all, we enjoyed Glenn Laverack, an expert in health promotion and advisor to the WHO, with the lecture tittlecongreso general «The role of patient activism». Glenn shared with us his thoughts on patient empowerment and deepened the idea of patients and organizations health activism to change systems. Glenn conveyed that activism does not have to be accompanied by negative prejudices. It is positive when helps to improve systems with strength and determination. We cannot only rely on governments to improve things we do not like, Glenn said. Nor personal action is sufficient. It is patient control and the power of raise their voice through collective participation the engine that allows the systems real change. Patient voice joins in small groups forming organizations and alliances. Those groups, more organized, then have capacity for changing the system. An example of this idea is the Mad Pride movement, in which former patients around the world are working to reduce the stigma of mental illness. In question time, kindly answered by Glenn, we were hearing also interesting reflections by a passionate audience which made a day start very stimulating. All questions revolved around concepts that later would be repeated: the patient’s voice and collective action for social and political change.

ClYbWhGUkAA8vLySome of the ideas raised through the congress were the need to give the patient the ability to be represented in the institutions, «You cannot guarantee the sustainability of the NHS if the patient does not have the option to make itself listen». Patients associative movement should be professionalized to allow their representatives greater and more complete dedication. There is a growing need for patient associations to find financing systems in order to become spokespersons of these institutions.

Patient’s voice
We cannot forget that patients are also an exceptional and «cheap» resource, which transmit something that experts cannot convey: the passion of the lived experience. With the widespread of social media, social networks are helping patients to be more active, to meet each other and actively communicate with society. But moreover, patients must be trained to be effective institutional partners. Some Universities and educational centres are already working in landing training programs to provide formal skills and competences to develop this seek patient and health carers expertise.

Patient centered design
On other hand, talking about using models of excellence at health centres, we could find multiple benefits of those DSC_1394okmodel when focuses its efforts on improving every days’ patient and families experience. We were talking about the importance of re-create the future of health care with patient participation, involving them in management decisions by creating patient committees who meet regularly and share health centre management. It will be key to include the user in the flow of redesign the health services, focusing the issues from the user point of view, allowing them to add value and improve health indicators. The epatient or empowered patient is seeking actively to manage its health. Empower patients use Internet to find reliable information and support from other patients in similar circumstances. Individuals want more and more to be involved in making its own health decisions. Some health systems have already programs to increase and facilitate this option.

In order to have a more humanized health, we need to surpass the old medical model stating «everything for the patient, but without the patient». It is also important connecting and increase the empathy with patients and their families. Patient expects to be cared for not only the physical but also the emotional aspects. When caring for their emotions, the prognosis of patients improves. Humanize health means also to inform and empower patients to self-care. A clear example of empowered patient is patients with rare illness. For them, to be empower is not just an option, but the only option itself. In order to improve the attention to people and their families we only need to ask: what you need? and actively listen to them.

Participatory patient workshops
In the evening, after lunch, participants were divided into groups to attend one of the three participatory workshops organized with the aim to work in small groups, invited participants to take action by putting the focus on the patient experience strategies. The workshops organized were: «Avoiding the rate of technological failure: patient-centred innovation”, “Listening to the patient to improve your experience” and “Improving customer experience health insurance» It really impresses to see the valid ideas that people are able to offer when they get to work together.

Beryl Institute
Finally, we hear the closing conference entitled «Patient experience: a growing overall movement”, via Internet. The conference was conducted by Jason Wolf, President of Beryl Institute, from Bedford, Texas (USA). We could all grasp the strength of the message of one of the greatest exponents on the study of the importance and impact of patient experience worldwide. His words did not leave anyone indifferent and his speech was very inspiring for all of us: «Real change begins with the simple act of people talking about what matters to them.»

Best patient initiative award
Finally, before closing Congress, best poster award presented to the Congress was given to Psoriasis Network, BeFunky Collage3awarding its initiative for the creation and dissemination of audiovisual content related to the world of psoriasis and psoriatic arthritis, a work developed from the encounter between students, artists and patients with psoriasis and psoriatic arthritis. The poster was entitled «Program «MeetingDoc-psoriasis» of filmmaking on psoriasis and psoriatic arthritis». To end a busy day, full of interesting information and initiatives focused on the patient, Carlos Bezos, on behalf of the entire Institute for Patient Experience team thanked attendees and speakers and closed an event that will mark the agenda of this global movement, of the patient experience, unstoppable.


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