I am the Network Development Coordinator for ImproveCareNow, which is just a fancy way of saying I'm a jack-of-all-trades. From invoices to eNewsletters, I have my hand in it. I do have a special interest in marketing and communications, and in developing a diverse community of people who can communicate openly, share ideas and support each other.
Last month Peter Margolis, MD, PhD – Scientific Director for the ImproveCareNow Network – was interviewed by Steve Usdin of BioCentury on the topic of Network Building. What jumped out at me was Peter’s response to the question: Can the Network that you’ve created also be used to help in the search for new therapies and cures?
I’ve worked with ImproveCareNow for over two years now and I am constantly impressed with the growing variety of positive outcomes that stem from the work being done across the Network. Although hugely important, it’s not simply about raising and sustaining remission rates for kids with Crohn’s and colitis.
Thanks for joining ImproveCareNow for #ibdweek! If you’re still not sure what that means, then go over to your Twitter account and type #ibdweek into the search box to see all the conversations that include that tag. I bet there will be a lot!
In honor of #ibdweek, ImproveCareNow was so lucky to have three awesome ladies from the PAC - Patient Advisory Council – writing fresh new posts about health care innovations being developed by the C3N Project and tested by patients in the ImproveCareNow Network. These innovations are going to help the ImproveCareNow Network transform chronic illness care for kids with IBD.
Jill – chair of the PAC – asked Is Awareness Enough and shared how Personal Experience is so critical in helping to design the best care possible for each and every patient. Believe it or not, doctors don’t know everything.
Jennie – wrote Ginger.io – the ‘Psychic’ Phone, about the iPhone and Android smartphone app that Jennie and others are testing right now. The app collects data, called Passive Patient Reported Outcomes, and compiles them to help patients and doctors understand how activity is affected by IBD – and how changes in activity might predict the onset of a flare. Shoulder to Shoulder is about patient activation – or empowering patients and families in getting meaningfully involved in the design and delivery of their own care.
Sami – wrote Emma: Your Waiting Room Ally, about an iPad app that’s bridging the gap between tech-savvy patients and their doctors. Sami also wrote Not Alone: A Guide for the Climb, about the Self-Management Program – “Any tool that simplifies the complexities of living as a young person with a chronic illness is welcome in my book. A free PDF of the handbook is available on the ImproveCareNow website; and will soon be released as a digital interactive program. Sami finished out #ibdweek with YouMeIBD: Making the Connection. It is a social networking platform that is all about bringing patients together based on more than just a diagnosis. Here are two screen shots:
As I write I am coughing and sniffling my way through my first cold of the season. Since my daughter started school in 2010 I have been exposed to a whole variety of new viruses – especially this time of year. Speaking of viruses, there’s another kind out there that can make the common cold look like a walk in the park. The Flu.
The flu is bad enough all on its own, but kids with Crohn’s and colitis should take it even a bit more seriously because the flu virus can stimulate the immune system and that can cause a flare. One way to take control and help prevent that from happening is to get protected against the flu early in the season.
I noticed just the other day that my local pharmacy has put up their flu shot sign – which means the vaccine is available. The point: add ‘flu shot’ to your list of questions for your next visit to the doctor (if that happens to be soon), or call up and schedule an appointment to get your flu shot today. Getting protected against the flu may help keep you in remission.
Keep in mind: if you are taking medications that block your immune system (such as: prednisone, azathioprine, 6MP, Imuran Remicade, Humira, methotrexate and others – ask your doctor to be sure) you will want to get the killed vaccine (the shot), not the live vaccine (the nasal spray).
Alex had also shared this post with us here at LOOP, but instead of just re-posting it I wanted to take the opportunity to send you over to The Gutsy Generation. It’s a great blog! The contributors are young people, just like Alex, who live with IBD and have decided to share their stories with the world. They all definitely get two enthusiastic thumbs up from me!
“It is my belief that the “sweet spot” for quality medical care lies somewhere between the laboratory and the bedside. Those truly talented healthcare providers are those who are able to blend the ever-evolving science of medicine with the art of taking care of patients.”