Plenary HallModerated Panel Discussion
Jamia Crockett became a patient guide for Novartis in 2012 to share her experiences as a patient living and managing Multiple Sclerosis. As a patient guide, she has completed over a dozen live speaking engagements, from Pennsylvania to North Carolina. Becoming an ePatient was crucial; she is creating a medium to have meaningful interactions with patients, caregivers, and the general public.
She decided to post her journey and life lessons learned about living and managing MS from an empowered perspective. She started tweeting about her travels, using Facebook to update her friends about the work that she has been doing as well as using Linked In to help her bring awareness to MS. She has made wonderful connections with other people living with MS via Twitter and Facebook, and she frequently has conversations about potential treatments, diet, exercise and similar topics. She is currently working on her own website to increase awareness and track her MS journey.
She believes that the future of healthcare will be a virtual experience first and then become personal. As a presenter, she strongly advocates to patients that they need to be part of their own healthcare conversation. Her hope is that by attending Medicine X, she will be exposed to other like-minded individuals who are actively moving the needle forward in the utilization and value of patients as experts in their own healthcare. She hopes to make great connections with other like-minded individuals, as well as learn best practices and innovative ways to continue the dialogue with patients.
There are many ways to describe yourself as an ePatient: empowered, engaged, electronic, effective, efficient. I've always felt the only way to describe myself as an ePatient is through my personal ePatient mission statement:
"As an ePatient, I will work tirelessly to motivate, educate, and inspire others in the cancer communities to achieve their best health. By sharing my personal experiences with others facing a cancer diagnosis, I will do my best to improve their treatment and survivorship experiences. I will reach out to all cancer community partners including health care providers, pharma companies, and medical institutions to ensure everyone experiencing a life touched by cancer will always have the best resources and support available to them. Cancer can't beat a community!"
Using this mission statement as a guide for my work, I know that I can be an empowered, engaged health activist working to make meaningful, lasting changes in the cancer community. By drawing on my social media skills, engineering background, and in-depth understanding of the patient experience, I work to be an effective and enthusiastic ePatient.
Medicine X provides me with an opportunity to learn from the absolute best in the ePatient health care space. As a 20-year, three-time cancer survivor, I've worked very hard over the past few years to advance the patient experience in the field of oncology care.
Cancer has a way of interrupting dreams and changing the course of a survivor's life. As an undergraduate studying Mechanical Engineering, I quickly learned that great amounts of determination and grit would be required to achieve my goal of completing my degree and beating cancer. That experience reinforced how fortunate I was to have an incredible support system of family and friends helping me along the way. I try to apply every lesson I've learned in my work to help others through the difficult journey of cancer treatment. I'm constantly looking for new ways to engage and inspire the cancer community as a patient blogger. I feel I'm on a path to help improve health care in America, and it has led me directly to this program.
I know I'll learn additional skills and make new contacts at Medicine X, which will help further my dream of improving the patient experience for everyone dealing with cancer. Having the opportunity to sit next to fellow ePatients and health care professionals who are all working toward similar goals is a chance I couldn’t pass up.
I would like to learn how to help engage and empower the remaining patients that need additional help or motivation to take this journey. ePatients are special people. By having the opportunity to work with other ePatients working in other disease states like diabetes, mental health, I feel we can begin to build a set of best practices or guidelines to help others take the steps towards becoming an ePatient.
Gilles Frydman is a pioneer of medical online communities. He is the founder in 1995 of the Association of Cancer Online Resources (ACOR), the largest online social network for cancer patients, composed of nearly 200 support groups for individuals with cancer. ACOR has served over 600,000 cancer patients and their caregivers to optimize patient care, for which Frydman was named by CNN in 2008 as one of six Empowered Patient’s Health Heroes.
He blogs regularly at e-patients.net, is a frequent speaker to health care audiences in the US and France, and has appeared in many publications ranging from the British Medical Journal to the Wall Street Journal.
He is a member of the Cook’s Branch Initiative, a group formed by the late Dr. Tom Ferguson to promote participatory medicine; and with this group is a co-founder of the Society for Participatory Medicine and currently serves as its vice president. He serves on a number of advocacy and advisory committees in support of patient-centered computing, consults for Internet-based corporations and startup initiatives, and has received funding from the Robert Wood Johnson Foundation to study and disseminate information about online patient resources.
His most recent projects are related to the ways in which online environments can be used to facilitate and improve health care, particularly for people suffering from rare and deadly conditions.
As a blogger (DCpatient), a member of the Society for Participatory Medicine, chair of the board of the American Liver Foundation, and CEO of CryerHealth, I communicate virtually and in-person with thousands of patients, patient advocates, and providers in disease states I am personally living with—ulcerative colitis, liver transplantation, infertility, autoimmune manifestations (arthritis, eczema)—and those I advise—cancer, kidney disease, chronic wounds. I have been recognized by the FDA, ONC, and patient associations as a leader on the e-patient space and take that role and commitment seriously to elevate the voice and perspective of patients throughout healthcare.
I want to immerse myself in innovative thinking and innovative people who are committed to transforming the role of patients in health and health care by changing thoughts, attitudes, technology, design, and systems.
I want to learn about new approaches and new solutions to challenges of patients, caregivers, and providers sharing with the many organizations and emerging companies with whom I interact. Of particular interest are strategies to encourage physician and health system adoption of new technologies and ways to link patient generated data and technologies to EMRs and the health system work stream.
Each one of us can use our own self-care and educate our own physicians to create a ripple effect that changes the entire system. Consider how may providers and practices a complex patient interacts with. These are all opportunities to reform the system. By organizing your information and translating your story, you can redefine the patient-provider relationship. I’m interested in focusing on the solutions to health care problems, and this starts by thinking globally and acting locally.