From hiking in the dark to changing laws, it’s been a fantastic year for all the amazing organizations we work with at Change Together.
Before 2017 becomes a distant memory, we take a look back at some of the most popular stories of the past 12 months. Click on the titles to be taken to the full stories.
In February, we reported on the newly published Standards for Psychosocial Care of Children with Cancer and their Families. Dr. Lori Wiener, chair of the American Psychosocial Oncology Society’s Pediatric Special Interest Group, explained the importance of the standards.
“As a result of developing these professional tools, there is now far greater awareness of psychosocial services and the availability of standards of care in this area. These standards have enabled individual sites to evaluate their own performance, to implement the standards if they had not already done so and to recognize there may be barriers to implementation and how these could be overcome.”
The Society of Decision Professionals and the Society for Medical Decision Making partnered to host the inaugural Shared Decision Making Summit.
Tyler Ludlow, SDP board member noted how: “It brought together a broad range of industry representatives, from patients, patient advocates, researchers and physicians, to pharma individuals involved in clinical development, patient advocacy groups and the real-world evidence sector, in order to discuss how decision making could be improved across the wider healthcare sector.”
Cancergraph, a mobile app that allows people with cancer to better find clinical trials relevant to them, was launched by Malecare in March.
“Most patients struggle to find trials that meet their unique disease profile. Now, instead of asking cancer patients to do all the searching, Cancergraph distills each user’s health data to provide – in real time – only the specific cancer trials that apply to them,” said Darryl Mitteldorf, founder of Malecare.
On February 4, 2017, World Cancer Day highlighted the importance of physical activity by inviting the world to host and share their very own #WeCanICan events.
Taking part in exercise helps people live better lives and reduce their risk of cancer, as well as playing an important role in the treatment and recovery process. This campaign got people sharing their activities through social media.
The Patient-Focused Drug Development Initiative was part of the Federal Drug Agency’s (FDA) mission to put patients at the center of decision making. Now complete, the initiative comprised a series of 20 meetings covering a host of disease areas, from lung cancer to hemophilia.
Dr. Francis Kalush, Center for Drug Evaluation and Research within the FDA, told Change Together: “We have significantly increased our focus on engaging patients to recognize the critical role they play in informing our understanding of living with a particular condition, the therapies they receive and how we might find ways to develop new treatments.”
Change Together hosted its first live webinar in December, debating how collaboration and education can be used to drive positive change for patients.
It featured Jessica Bateman of the Urology Care Foundation, Steven Gregg from the National Association for Continence, and Phyllis Greenbeger from HealthyWomen.
If you missed it, you can watch the recording here.
A record-breaking 205 people took part in the Chris Klug Foundation’s 11th Aspen Summit for Life. The annual event, which takes place at night, aims to raise awareness of the importance of organ and tissue donation.
Lauren Pierce, Executive Director of the foundation, said: “Not only did we beat participation numbers for our Ride for Life and Party for Life events, we beat our fundraising total by a huge $40,000.” In total, they raised a mighty $172,000.
The New York Step Therapy Bill, which reformed insurance law to improve access to vital medications, was signed into law on December 30, 2016.
The bill is designed to improve access to vital medications by reforming the insurance industry directive known as step therapy or “fail first” which requires patients to try and fail one type of medication before being moved on to another, potentially more effective one.
The news was welcomed by advocacy groups and people with long-term conditions alike.
Healthcare policy should be led by the answers to three questions, according to the President of Astellas Americas Jim Robinson.
In an article for STATnews, Jim said policymakers needed to consider how to ensure patients got access to the highest quality care, what could be done to simplify healthcare and how to rethink incentives across the system.
WomenHeart: The National Coalition for Women with Heart Disease, celebrated its 18th birthday in 2017.
Set up by three heart attack survivors, it offers women with heart disease social and emotional support and empowers them to tell their stories. It has 20,000 members across the United States and an extensive list of initiatives.
“There’s no other organization or program that I’m aware of that focuses solely on providing the social and emotional support women heart patients need,” Mary McGowan, WomenHeart CEO, told Change Together.