Call: Interview survey - Improve experiences with medical care for Dysmelia patients

Posted on Wednesday 13th July, 2016

Call: Interview survey - Improve experiences with medical care for Dysmelia patients

Call: Trying to improve experiences with medical care

Please respond to:
Dr Elizabeth Horak MD DPhil MSc DCBT
Medical Coordinator, EDRIC

14 Junly 2015

Dear All,

I am Dr Elizabeth Horak, medical coordinator for EDRIC.  I am a doctor, and my background is caring for people suffering from incurable conditions.  The main objective here is to improve the patient's experiences in life, enhance the quality of life, and to help them to live a full life, while living with the incurable condition.  I would like to work for EDRIC in the same terms: to help people living with dysmelia to have the best quality of life, and to ensure that they receive the best medical care available.  For this, we need to learn from the patients' experiences, in order to help the doctors providing better service for future patients. 

One of the main objectives of the Stockholm Conference was to get together people working on this field, and as a result, to improve the care that people with limb differences receive.  For me, one of the most important outcomes of the Conference was that we could start collecting and discussing the exact experiences of those who needed medical care.  This was a special, eye-opening exercise that made me determined to follow up the topic.  So, aiming to improve medical care, we would like to learn more from poor (and from especially good) experiences. 

With this, I need your help.  Would you trust me to discuss your (or your family members) experiences with medical treatment? Naturally, this is a confidential discussion; the individual's name or the doctor's name that is not important, but the experience is.  Naturally, if you tell me your email / contact details, it helps, but that information remains with me, and confidential.  The only purpose of this exercise is to see the full picture, to see what have been the difficult points for the medical profession, and to help doctors to be aware and avoid the pitfalls.  With this, hopefully, the problems can be avoided in the future. 

If you can and are prepared to help me in collecting the experiences, please contact me by email (on the address above), then if needed, we can arrange a discussion on the Skype, or personally. 

Please contact me by the above email first.  I much value your help and contribution, for the benefit of others in the future. 

With best wishes,

Elizabeth Horak


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