Social Media Provides Patients with Strong Support System, Improving Their Health and Wellbeing
April 15, 2016 (PRLEAP.COM) Health NewsWashington, DC and Cambridge, MA (April 15, 2016) — The Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) is pleased to announce that it has partnered with Cure Forward (www.cureforward.com), an online platform bridging the gap for patients and precision medicine, to support their mutual missions of improving access to personalized, patient-centered health care in the United States
Through Cure Forward, patients can retrieve molecular diagnostic test results ordered by their physicians from accredited laboratory test providers, and then use that data to access educational information, collaborate with other patients, or investigate treatment options including clinical trials. With its unique clinical trial matching technology, Cure Forward has created a streamlined process to directly connect clinical trial administrators with participating patients. The company inverts conventional approaches to trial matching by bringing trial invitations directly to patients.
Stacey L. Worthy, Director of Public Policy at Aimed Alliance, recently sat down with Alicia C. Staley, Patient Advocate and Community Manager, to learn more about Cure Forward.
What is your role at Cure Forward?
Alicia: I am the patient advocate and community manager for the Cure Forward team. My role is to help patients, caregivers, and other visitors find the support, knowledge, and assistance needed to understand and access precision medicine-based cancer treatments through our social media channels.
As a patient advocate, I understand that patients are just learning about precision medicine. In this role, I strive to inform them and others about genomics and clinical trials through innovative educational materials and community support tools. It is our goal to help patients understand the importance of accessing their genomic data and how to use it to access treatment options they may not have been aware of. We share information and the stories of others that have accessed precision medicine to give patients a complete picture of why they should consider clinical trials.
What drew you to Cure Forward?
Alicia: I am a three-time cancer survivor. I was first diagnosed in college while studying to be an engineer. My background is in tech systems and technology engineering. My cancer journey overlapped with my tech journey. Initially, I was diagnosed with Hodgkin's lymphoma. As of result of the radiation treatments, I developed breast cancer in 2004 and 2007. I was drawn to the space because patients are struggling on their journey to find the right health care solutions. Cure Forward provides tech tools and access to information, and we are building a supportive community. It's a different way of looking at it.
How did Cure Forward come about?
Alicia: Cure Forward was founded by Martin Naley as a way to help patients finally be able to access precision medicine. As an executive in genomics, he frequently received calls from friends, family members, and others asking for advice when they or their loved ones were diagnosed with cancer. His goal was to use technology to allow everyone to access and understand the treatment options that may be available to them by accessing their genomic profile and potential clinical trials that may be applicable.
What benefits can patients receive from mapping out their genome?
Alicia: Cancer starts in your genes. By understanding where in your DNA the gene mutation occurred, you may then use that information to access targeted therapies that you may not have considered for your cancer type. Precision medicine targets the gene, the source of your cancer, rather than just focusing on treatments described for your location or type of cancer.
What is something more people should know about clinical trials?
Alicia: Clinical trials are where new therapies are proven. Almost every drug on the market today is because of clinical trials. They're not just a last ditch effort, but may offer the best treatment for a patient's disease. Clinical trials should be part of patients' full treatment consideration set. Patients should work with the doctors to consider all of the relevant options- including clinical trials.
As a three-time cancer survivor, how has social media impacted your ability to create relationships with online patient communities?
Alicia: There was a dramatic shift in how I dealt with cancer treatment options since the first time I had cancer. I can now go on a social platform, like Twitter and Facebook; say, "I have cancer"; and connect to so many people who are willing to share their stories and journey. Patient communities are there to help along the way. They give patients the opportunity to share information, make connections, build relationships, and find people with similar journeys that relate to the patient in a way that caregivers and family might not understand. When I was diagnosed with breast cancer for the second time, I joined Twitter because I had seen people tweeting and interacting online about their survival journeys. At first, I was reluctant, but within thirty minutes of poking around I found other women who had parallel journeys. It was amazing. For too long, we've been a function of our own geography-just local support groups with different kinds of cancers. Social media shrinks the world. It's a way to customize and specialize the information you're looking for. It is an amazing opportunity.
How can patients use social media to create a better quality of care or life?
Alicia: By providing connections with others who share your experience, you can learn from one another and share valuable information that you may not have been aware of. At Cure Forward, we take this one step further by helping people connect not just by cancer type, but by their specific genomic profile. We provide community groups and individual personal mentors who share your genetic profile and are able to share information that you would not have had access to before.
The Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) is a tax-exempt, not-for-profit organization that seeks to improve health care in the United States by supporting the development and utilization of novel, evidence-based treatments. For more information, visit www.aimedalliance.org and follow @Adoptinnovation on Twitter.