Working WITH not FOR patients

By  - MAY 16, 2017

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Malta, May 2017 – “Culturally we have learned to trust the doctor, it is time to start learning to trust the patient”, says Christine Bienvenu (@SuissePatiente), a three-times breast cancer survivor and Board Member at the Patient Empowerment Foundation (PEF). Christine was a keynote speaker at eHealth Week held in Malta last week and organised by HIMSS Europe, the European Commission and the World Health Organisation(WHO). At the beginning of the session ‘Working WITH not FOR patients’ Christine went through her personal story as a patient and as the mother of a child with Asperger Syndrome.

Not long after being diagnosed, Christine started a community for French-speaking women with breast cancer in Switzerland. She noticed that there weren’t enough resources online for these patients and she created Seinplement Romandes. But her patient empowerment tipping point was when she realised that her oncologist was not accepting the questions and the information she was bringing to the appointments. That meant she was not getting all the options available. She decided to look for a new oncologist who accepted her as an equal in the decision-making process. From the first appointment, she saw that her new medical team was different: “Today we are going to work together”, they told her.

During her cancer journey, Christine has seen that there is an increasing need for education among healthcare professionals. “We are all experts in our professional fields and patients know about their illness. I don’t mean that we know more about the illness than the professional, but patients definitively know more what it is like to live with it.”

One important part of Christine’s advocacy work consists of training doctors and nurses about the importance of giving patients a voice in their disease journey. And to trust them as an equal partner. Christine trains healthcare professionals in social media and teaches them how to listen to patients. As she puts it, “as a doctor, don’t be in social media if you are not going to answer patients.”

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At the session ‘Working WITH not FOR patients’ Christine was joined by Steven Tyler, Head of Strategic Innovation and Influencing Partnerships at the UK Royal National Institute of Blind People (RNIB) and Oliver Scicluna, Chair of the Commission for the Rights of Persons with Disability in Malta.

As a board member of the Patient Empowerment Foundation (PEF), Christine is also working on projects to educate and empower patients so they are more in control of their health.

Teresa Bau, Director of Communications at Patient Empowerment Foundation.

http://powerfulpatients.eu/2017/05/16/working-with-not-for-patients/

 

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