06282017Headline:

Improving Healthcare from Patient and Family Perspective

As I boarded the plane as a first time attendee for the I was honored to have been selected as an attendee.

I look forward to a continued relationship with the Partnership for Patients’ (PfP) Patient and Family Engagement (PFE) Network as I learn more about the patient and family leaders paving the path ahead of me. As I wrote about in Te Toca A Ti, supporting oneself during hospital time is crucial and requires building lifelines and networks in advance and preparing for the ride of your life. The Department of Health and Human Services is committed to reducing hospital acquired conditions and hospital admissions.  I encountered some patient and family members whose lives are severely altered – by loss of life or severe injury. I was inspired by their can-do attitude to help improve healthcare for others.

I was amazed by speakers who shared perspectives for patients and doctors alike. Dr Leana Wen shared lessons from her book, When Doctors Don’t Listen, presenting a realistic view of the doctor-patient interaction with lessons for patients. She offered easy to apply advice and explain why it is important for patients to provide the best information. Dr Nancy Snyderman and Lindsey Nohr Beck shared the intertwined experiences and recollections from both a doctor and patient diagnosed with throat cancer twice. Dr Snyderman and Lindsey shared the medical and personal perspectives of building trust and honest caring relationship.

As I listened to the inspiring stories of partnership, I am reminded of the great partners we have developed over the past 7 years. In one instance, I received a hug from our pediatrician who was so pleased with our daughter’s progress. I am passionate to make sure that our daughter’s care is not an exception; but rather it is a norm that parents have tools to support themselves. I’ve shared and written about how to build a team to discuss with doctors, find a community for support and communicate frequently with our care team.  Caring for Alexis, our daughter,  is seeing into the future that consolidates silos to care for patients in their single body, cares for patients where they are – home, community, hospitals, communicates compassionately and creates a future for her health and well-being.

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