Published on September 5, 2017
When Andrew, my husband and best friend, was diagnosed with chronic lymphocytic leukemia many years ago, my reaction was shock…disbelief…grief. Buckets of tears and huge waves of anxiety and fear. How could this be happening? What did he…what did we do to deserve this? What is this? What do we do now? Andrew asked the same questions—we were in this together. Serious illness is almost always a family affair. Probably like you, we no longer felt in control of our present—or our future. Andrew and I continue on a cancer journey together to this day—he is now going through re-treatment for that same leukemia after a 17-year remission. I cannot tell you that this “rerun” has been easy for me—it hasn’t been. But along the way I…and Andrew have found that it is critical to our sanity to be able to play an active part in treatment decisions, timetable for treatment, and get ourselves connected to support systems and resources. I know that many people go through this very same set of emotions. I truly believe that the only way to move forward productively is to take back control.
Last year, we were fortunate to connect with a terrific global conference called Health 2.0—held all over the world, primarily focused on innovations in health-related technology. The organizers of this conference understand that while technology can support patients and loved ones navigate and manage aspects of their health concerns, there are many other "non-tech" strategies and aids that can empower during a really challenging aspect of our lives. We were asked to share our personal journey in Barcelona and to bring others we knew to do the same. This year, Health 2.0 asked us again to step in and this year's session—Patients 2.0: Taking Back Control and the Tools to Do It—was born.
Here is what Andrew and I want to make happen this time…we want to arm every attendee with tactics to better cope with and manage their unique health journey. We are putting together a panel and other contributors that offer a variety of important perspectives:
- Patients and care partners to share their own strategies for navigating the steps of selecting a medical team, taking part in treatment option decisions, weathering the emotions that go along with telling family and friends and asking for support when needed, getting through “watch and wait” and/or treatment, and recovery with life after serious illness or living with chronic disease.
- Renowned physicians who support and treat patients with ongoing medical conditions will share their perspective on how patient/doctor communication works best, and what patients can do to successfully engage in the process of developing and managing their own health condition.
- Health technologists to share tools they have developed to support patients and their circle of loved ones during the many stages of diagnosis, treatment and post-treatment disease management.
A key part of this session will be small group discussions among attendees. We want every single person—patients, care partners, friends and family members, to come away with some clear actions they can take to gain better control or support their loved one’s health situation - now and into the future.
You may wonder why Andrew and I are doing this—donating our time to plan and moderate this and making sure that the session is available for free to all attendees. In fact, why do this at all? There's a pretty simple answer: We continue to live the patient and care partner journey. And we know that there are many others who have lots of great wisdom and practical advice they have shared with us along the way—we want to spread that wisdom around! And to be clear, this is not just for cancer patients. The challenges we face and tools and resources we have discovered apply across ongoing conditions like asthma, multiple sclerosis, diabetes, Alzheimer’s disease and many others. These too require collaboration with a medical team, being active in treatment decisions, figuring out how best to manage ongoing symptoms, and taking charge of how the rest of your life unfolds while living with a diagnosis you'd rather not have.
I hope that many of you can join us in Santa Clara, California on October 1. If not, we plan to capture as much of the wisdom and recommendations that come out of this session through interviews with participants and then post these on Patient Power. And, as always, we welcome your comments and suggestions. You can write to me directly at [email protected]
Knowledge really is the best medicine of all,
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.