News

The National Alliance for Caregiving (NAC) has released a report on caregiving of individuals with Inflammatory Bowel Disease (IBD). Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD – Crohn’s disease and ulcerative colitis.

The full results of the survey can be viewed online at http://www.caregiving.org/ibd

The Board of Directors and the Strategy Council of ImproveCareNow have announced that President and Executive Network Director, Dr. Richard B. Colletti has made the decision to step down in June 2020.

ImproveCareNow was chosen as one of eight comparative case studies by the Project on Transparency and Technology for Better Health at the Harvard Kennedy School Ash Center for Democratic Governance and Innovation. In Exchanging Information to Create a Learning Health System: The ImproveCareNow Approach to Engagement, author Elena Fagotto elaborates on the power of learning networks, such as ImproveCareNow, to “enable different groups to exchange knowledge and co-create a learning health system to improve pediatric IBD Care.”

We know that many of the most innovative and high impact ideas for improving pediatric IBD care are likely to come from those living with the condition on a daily basis—ImproveCareNow (ICN) parent and patient partners. Previously, there was not a formal mechanism to encourage and provide support for projects proposed by these partners. While many successful projects have been carried out by dedicated parent and patient members of the ICN community, many more are not able to be advanced without funding and assistance.

In 2017, we decided to address these needs and advance projects that will make a difference in the lives of our community members. With support from the David R. Clare and Margaret C. Clare Foundation, we launched the ImproveCareNow Patient and Parent Innovation Fund. In the first two years, the Innovation Fund has supported three projects, and we are excited to announce that funding will continue with Round Three of the ImproveCareNow Patient and Parent Innovation Fund in 2019. 

Most people experience stress at some point in their lives. Stress, especially when severe, can not only make you feel bad, it can also worsen existing health problems like heart disease, type 2 diabetes, obesity, high blood pressure, depression, and even cancer.

Healthy Mind Healthy You is a new study about how mindfulness can help people cope with stress. Funded by the Patient Centered Outcome Research Institute (PCORI) and involving 19 Patient Powered Research Networks (PPRNs), Healthy Mind Healthy You will be able to study the effects of mindfulness on a wide variety of populations and conditions.

This study is for members of ImproveCareNow. It includes patients, caregivers, and family members.

ImproveCareNow has had enormous success since it began 12 years ago, including increasing remission rates for thousands of youth with IBD, transforming how care is being provided, enlightening and exciting clinicians and other care providers, and engaging patients and parents in a common mission and work. We are pleased to share our ImproveCareNow Annual Update, which includes highlights and achievements from 2018 and plans for our continued work to improve health, care and costs for kids with IBD in 2019 and beyond.

In 2018 ImproveCareNow:

ImproveCareNow was recently included on a Healthline resource page to help direct people seeking help or information about Crohn’s disease.

ImproveCareNow has officially endorsed the 2019 Crohn’s & Colitis Congress®: A Partnership of the Crohn’s & Colitis Foundation and the American Gastroenterological Association.

ImproveCareNow Executive Directors Peter Margolis, Richard Colletti and Ramninder Hansra announced on October 8, 2018, that Sarah Myers has made the decision to leave her role as Executive Improvement Director for ImproveCareNow. Sarah’s last day will be October 19.

The National Alliance for Caregiving, in partnership with the Crohn's & Colitis Foundation and ImproveCareNow, is launching a first-of-its-kind survey of Inflammatory Bowel Disease (IBD) caregivers. The survey, which is being conducted by researchers from Crimson Research at New Mexico State University, is seeking feedback from family caregivers of children and adults living with Crohn's disease or ulcerative colitis, the two major types of IBD. "Through this survey, we hope to capture the power behind these unpaid friend and family caregivers and to articulate what they are doing so that they can serve as a model for caregivers in other communities," explains C. Grace Whiting, President and CEO of the National Alliance for Caregiving. 

Take the Caregiver Survey >>