Physicians Facilitate and Benefit from Collective Care


The aspiration of Collaborative Health-Care guides readers through the introduction of our soon to be released book, Collaboration and Co-Creation: New Platforms in Marketing and Innovation. (Springer) Collaborative health-care is a groundbreaking and progressive form of treatment. Not only does it engage patients, but it encourages a physician—patient cooperative relationship during every aspect of care, from diagnoses to treatment of their disease.

The Wiskott-Aldrich Syndrome Family Conference offers an extraordinary example of shared learning.  With families at the heart of the agenda, the conference was designed as a comfortable weekend, one where families and physicians spent time sharing and learning from each other. Panel discussions offered compelling subjects, without structured agendas, collectively exploring the issues most important to patients and physicians.

The conference was sponsored by:

Immune Deficiency Foundation (IDF)
National Human Genome Research Institute (NHGRI)
NIH Office of Rare Diseases Research (ORDR)

Physicians “listen-in” and learn

A global consortium of expert physicians were on hand and keen to stretch the traditional role of medical influence to include patients’ first-hand account of living with a life-long health concern. The agenda included formal research updates, but even those leaned more toward supporting highly interactive discussions and exploratory conversations to propel the direction of future research.

Real-time collaborative dialogues enabled rapid adjustment to research and sometimes a shift in their approach, but they also created depth and direction, a higher degree of patient care. Physicians gained immersive lifestyle knowledge that helps them to care for patients in a deeply personal manner.

Opportunity: collective learning…patient-to-patient

Patient-to-Patient sharing offered tremendous suggestions and comfort. Patients learned from each other…how to live.

Awareness was the most significant advantage for patients, but the ability to educate the expert physicians was equally gratifying and heartwarming.  “As if there was something I could do”.   Patients expressed how uplifting the event was.  Many wished their personal physicians and medical students could have attended.  “This is how medicine should be”.

It was important to be heard, also sharing ideas and thoughts with other patients and parents with younger children, those just starting their journey and discovery of living with WAS. For families, it truly helps to know others understand, and tenured families were happy to share personal stories, setbacks and breakthroughs.

“Medical advances…are great, but the lifestyle struggles have not changed” John Decker Jr.

Collaboration and Co-Creation: New Platforms in Marketing and Innovation. (Springer)  Also available for Chapter by Chapter download on Springer.com

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