"Still, there’s often confusion about who is caring for the patient ... " Playing off of Jimmy the Greek's comment,…
HIStalk is funding five, $1,000 scholarships for patient advocates to attend the HIMSS conference, with conference registration credentials provided by CTG Healthcare. Applicants provided their biographies and a statement of what they hope to achieve by attending, with the winners chosen by Lorre and Regina Holliday.
I have another motive. I’ve often pondered what our patients would think of the over-the-top excesses and unchallenged claims of both providers and vendors at the HIMSS conference. I hope these attendees, clearly identified by tee shirts bearing Regina’s artwork above, will serve as neutral observers keep us all focused on the people who we say we work for, but who we may rarely see face to face.
Each attendee will attend whatever educational sessions they choose along with having access to the exhibit hall in representing the patient’s point of view. Each will provide ongoing social media commentary during the conference as well writing a summary HIStalk article afterward. We’ll announce a time where the attendees, along with other members of The Walking Gallery, will be available to meet people in the HIStalk booth.
I created a contact form for each attendee to avoid publishing their personal email addresses. Please don’t spam them, but you can get in touch about anything related to their conference goals. It’s up to each person to respond if they so choose.
I became involved in pharmaceutical drug safety issues after the death of my husband, Tim “Woody” Witczak in 2003 as a result of an undisclosed drug side effect. I have taken my personal experience and launched a national drug safety campaign through www.woodymatters.com. My work has been featured in major news media such as Fortune, Readers Digest, Consumer Reports, Wall Street Journal, New York Times, and Star Tribune. I have testified before US Senate on PDUFA/FDA reform issues as well as numerous FDA Advisory Committees. In 2008, I was appointed to the FDA’s Psychopharmalocgic Drug Advisory Committee as a Patient Representative. In 2013, I co-organized the Selling Sickness: People Before Profits international conference held in Washington, DC bringing academic scholars, healthcare reformers, consumer organizations and advocates, and progressive health journalists to develop strategies and solutions challenging the “selling of sickness.” I am an active member of the Consumer Union Safe Patient Project as well as a part of the DC-based Patient, Consumer, and Public Health coalition making sure the voice of patients and consumers is represented in healthcare/FDA related legislative issues. In addition, I was just appointed to the National Physicians Alliance Board of Directors.
Professionally, I am an advertising and marketing professional with 25 years of experience in a variety of industries (e.g. airlines, automotive, fashion, and retail). I am one of the founders of Free Arts Minnesota in 1996, a non-profit dedicated to bringing the healing powers of the arts to over 4,000 abused and neglected children in Minnesota. I earned a BA in Business and Economics at Lake Forest College in Lake Forest, Illinois.
I am excited to be granted the scholarship to attend HIMSS in Chicago. It’s a great opportunity to network with leading healthcare providers and learn about the new healthcare solutions on the horizon. I also hope to be able to infuse the patient perspective with those I meet. Oftentimes others are speaking for what “patients" want and it’s not always in alignment with the real world patient / public voice.
As someone who has spent my entire career in advertising and marketing, technology is at the core of communicating with the public. Communication is also at the center of healthcare, not only between companies, staff, hospitals, but also between provider and patients and their families. I truly believe the only way we will advance healthcare is by working together, collectively.
Since I have a unique perspective of having foot in both advertising and communications AND patient safety worlds, it will be interesting to see HIMSS through this lens.
I am looking forward to attending HIMSS in Chicago this April. As one of the lucky HIS-talking Gallery Patient Scholarship recipients, as well as a woman who lives with Lupus, I am excited about the opportunity to meet and connect with stakeholders and businesses that believe including patients in the process is vital to the creation of successful partnerships within the healthcare and wellness industries.
Currently, I co-host and moderate @LupusChat, which leads a bi-monthly Twitter Chat (#LupusChat). I am a healthcare activist and recently was the host of WEGO Health’s #HAChat on the importance of Self-Care for Healthcare Activists. I am also a Creator of POPULOVE.net, which “redefines what fans can accomplish through music,” where I write and curate some of the content for the Pop Ed. and Causes sections of the community.
Being a part of the HIS-talking Gallery Patient team at HIMSS will be an informative adventure. My enthusiasm as a passionate healthcare activist and patient voice is loud and clear. If there is a chance to meet and engage with HIMSS attendees so that together we can gain insight to how the patient experience can be incorporated into their practice and businesses I am happy to share. I hope to connect and create an open dialogue with today’s change-makers.
Why do I want to attend HIMSS? It’s the biggest event of its kind — so big that most convention halls cannot contain it. My involvement in health IT has expanded in recent years, as this is the field most likely to include patients and one of the more innovative spaces in healthcare today. HIMSS is the preeminent health IT event — it’s the place to be! So it’s critical that patients are there, too.
It is crucial that patients attend healthcare events. We are in a transitional time where patients are recognized as more important than ever, but the reality is that there may not be a single patient on stage in the course of a multi-day event.
Who am I, as I patient? I have been living with chronic illness for 21 years, since I was diagnosed with Crohn’s disease at age 13. I’ve never been able to experience life as a healthy adult, but have enough medical education to warrant an honorary doctorate. More recently I’ve developed some secondary complications from the Crohn’s disease, and also Fibromyalgia. Because of this grab bag of conditions, I am in pain and discomfort (physical or emotional) at all times, but the levels vary.
My illness is not a blessing, but I do consider it a credential, along the same lines as my MBA or project management certification. I don’t primarily identify as a person with Crohn’s disease. Rather, I identify as a patient, in general, and if pressed, as a chronic illness or invisible illness patient. For a long time I did not know about many opportunities for patients, except for volunteering with my disease-specific non-profit, or fundraising for research.
My early experiences with disclosing my illness were so traumatic and dangerous that I was in the closet for most of my life. It was not until I started using social media to find and connect with other patients that I began to learn of ways to be involved on a different scale. In my professional life, I went from a graphic designer, to an MBA student, to a project manager, to a program analyst. I started off as a small cog in a large system, but slowly began to understand, and be excited by, working as a larger system. Recently, I realized that my advocacy evolved in a similar way.
I am excited about all the awesome people I will meet at HIMSS. To improve the health care system, we must understand the challenges and motivations of all the stakeholders. I need to understand why the doctor only has eight minutes to talk to me during my appointment. I need to understand why my pharmacy can’t accept refills on certain types of medicines. I need to understand how reimbursement works, and the regulations that hospital face. I need to understand why the timelines for improvements are so far out. I need to meet pharma employees and insurance CEOs and understand that they are not the enemy. I need to tell my story to all of these people, and yes, I need to listen to theirs.
We cannot solve problems by considering a single cog, we must see the whole machine and we must understand that it’s made of human beings, all with hopes, dreams, frustrations, and solutions.
My name is Melanie Peron of Paris, France. I am the founder of the Butterfly Effect. In September 2011, I decided to make a career transition and create the Butterfly Effect after my personal experience as a patient supporter for my companion. During this time I discovered the social exclusion and all the difficulties of families and patients have to face up.
I deeply believe that little actions can bring great consequences and that is why I chosen this name. The idea was to bring sweet moments for patients and families and allow people to live normal moments in difficult times.The Butterfly Effect has several missions : providing supportive care (art therapy, aesthetics, relaxation therapy, writing workshop), a 3D social network application (Bliss), cultural action (shows in patients’ bedrooms) and research (evaluation of the supportive care and the quality of patients lives).
Some numbers: more than 1,000 patients and families received 20 shows of music and storytelling in their rooms, over 200 people received collective and individual sessions (aesthetic, relaxation therapy, art therapy, writing workshop) and a pilot study evaluating of the well-being of patients treated with chemotherapy was conducted with a team of oncologists in Victor Hugo Le Mans [April 2014-January 2015].
I’m delighted to participate to HIMSS because it will allow me to connect with people who share the same dream as me: make health policy move forward for the benefit of patients and citizens. It will also be the opportunity to meet other walkers of the Walking Gallery and that is something very meaningful for me.
Whether we live in France or in the United States, thanks to our experiences as patients, supporters, and careers, we can improve our health and I deeply believe that it is by being together we can make a real and concrete impact ! I also will be happy to show Bliss, our 3D social network, to professionals. Maybe one day Bliss will be available in the US?
Finally, six years after the first idea of The Butterfly Effect, I’m very happy and honoured to come to Chicago to live this experience and to share it all over the world.
Thank you for the generous scholarship to attend HIMSS as a patient and family advocate. My overall goal for attendance is to deepen my knowledge about HIM and current trends. It is also most important for me to understand the gap between what hospitals and healthcare companies provide for EHR / EMR and HIT support to patients, such as what patients receive via patient portals vs. what we need, which is fuller access to our chart’s medical history, test results, and even the chance to review notes and visit summaries about us. Why is it so hard for us to get our own data? And why is our data not fully portable?
As the mom case manager to Jameson, a young adult with complex congenital heart disease, we need all of his data, both to make informed decisions and also to help him become knowledgeable about his medical situation. Along with most parents of children with special healthcare needs, we share the larger mission to raise young adults who are as health confident and as medically independent as possible. For most of my son’s life I’ve had no other choice but to collect and track his data on my own. I’d like to know how to help hospitals to better engage with us, to serve us and to meet our needs as key customers, by fully understanding our experience and the role we play in managing our own and our family’s healthcare.
Another problem I’ve experienced is that HIPAA rules are often applied unevenly, leading to yet another barrier that inhibits my ability to partner with and teach my son. These challenges only strength my resolve to find new and innovative ways to break down the silos between us and open the path to access our health information.
I’m very much looking forward to attending and absorbing all I can at HIMSS, not only to further my own learning but to inform my advocacy work. I’m happy to share my perspective on HIMSS15 by blogging or writing about the event; I also hope to present to other parents in my advocacy networks back at home. Perhaps most importantly, as a HIMSS first-timer who has been repeatedly warned by seasoned past attendees, I already have my comfortable shoes at the ready!