ImproveCareNow Michael_seid


ImproveCareNow Network to Participate in $4 Million Research Study Comparing Stress Management Approaches

Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

The ImproveCareNow Network will take part in a $4 million research project to determine the optimal type and frequency of mindfulness-based treatment for managing stress. ImproveCareNow is one of 20 PCORI-funded Patient-Powered Research Networks (PPRNs) participating in this study, which will also demonstrate the capabilities of PCORnet, the National Patient-Centered Clinical Research Network.

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Michael Seid #myICN

Michael Seid supports ICN for his daughter.If you're a parent, you know. You know what you'd do for your kids. If your child is diagnosed with a chronic illness, you discover that you'd do even more.  Until a cure is found, part of what you'll have to do is work closely with your child's doctor and care team. This can be hard and intimidating but everyone knows the best care comes from everyone partnering together – communicating honestly, sharing the work, pushing each other towards the goal.

 

Have you seen our health care system? It doesn't always work that way. But imagine if every interaction with your child's care team felt exactly like that – like you were part of the best team in the world. And your team had access to knowledge and wisdom from other best teams in the world. World class teams networked together to make things better for your child and all kids who suffer? That's what ICN is building. And you know what's even better? Having the opportunity to work with ICN to make this happen. That's why I'm part of ICN – we're the cure for waiting for the cure.


Parents as partners in care

One of the joys of working with the ImproveCareNow Network is seeing the results of co-production introduced more broadly to a learning community. At the same time, communicating what this is all about can be tricky – the idea that patients and clinicians can actually be partners (in health, care, improvement, and research) - is such a paradigm shift.  In fomenting this culture change, we have come to a deep appreciation of story-telling, art, and other creative expression as a powerful way of communicating beyond the hard data. That's why it's so breathtaking when we see this come along:


https://twitter.com/michaelseid11/status/448458248627027969

Justin, who made this video, is a parent in the ImproveCareNow network.  Collaborating with other parents and with some (minor) input from ImproveCareNow staff, he distills, in less than 90 seconds, this movement to its essence so much better than my feeble words could do.


Michael Seid, PhD

Michael Seid, PhDI’m a health care researcher interested in making health care work better for kids with chronic illness.  My sister has Crohn's disease and my daughter was just diagnosed last year with Crohn's disease.

 

Twenty five years ago, my sister was diagnosed when her intestine burst. Her bowels were so obstructed and inflamed, that they started leaking into her abdomen. After her first surgery, she found kind and wonderful doctors. My parents did everything they could for her. But her journey was rough. She ended up having three surgeries, a TPN feeding tube, losing all but 3 feet of her small intestine, and having way too much physical and emotional suffering. She never took her meds because she didn’t think they did anything for her. She felt completely alone and was convinced no one could help her.

 

Because my daughter is part of ImproveCareNow, her experience has been different. She was connected early on to other kids her age with Crohn’s. She learned how to track her symptoms so she and her doctor could determine that her meds were helping. And she collaborated with her doctor to figure out that Carnation Instant Breakfast helped reduce her fatigue. I’ve connected online with other parents for ideas about how to help and have shared this information with her doctor. Things aren’t perfect, but my daughter has been able to bear the burden of Crohn’s more lightly, in large part because of the way that ImproveCareNow has enabled us all to be more active partners in helping her stay healthy.

 

Taking ImproveCareNow to the next level is crucial.  I want to make a world where everyone can be part of the solution.  I intend to continue to work to make it easier for more people to make a difference for their health or the health of their children.

 

Michael


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