doc20 11 Insights of 2 E patients

MedCrunch had the pleasure to speak to Kerri Sparling  and Marie Ennis both empowered and vocal epatients and active members of the Doctors 2.0 & You community.

MC: Please give us three sentences about yourself in the context of health.

Kerri: My name is Kerri Sparling, and was diagnosed with type 1 diabetes at the age of seven, back in 1986.  Type 1 diabetes is a very serious, intrusive, and chronic illness, but most of the time, people living with it look “fine.”  I advocate for people with diabetes to show that, despite how invisible this disease may seem, it’s not, and it deserves research and funding for a cure.

Marie: I believe in being a co-creator of health. This means respecting the expertise of my doctor while also valuing my own experience and knowledge. I want to partner with my healthcare providers to make decisions about the best treatment that matches my particular circumstances and needs.

MC: You have attended and spoken at Doctors 2.0, why?

Kerri: The patient is so often talked about at medical conferences, but so rarely heard.  I was honored that Denise Silber asked me to give one of the keynotes at Doctors 2.0 in 2013, because it gave me the chance to raise the voice of the patient, and to highlight how the diabetes online community works as a tide to raise all PWD (person with diabetes) boats.

Marie: The invitation to speak at Doctors 2.0 last year was a great honour for me.  I already knew what an innovative and dynamic conference it would be, having followed along with it via Twitter for the previous two years.  Not only did I get a chance to share my story at the conference, I also enjoyed meeting face- to-face those I had come to know online. I came away with new perspectives and ideas and stronger ties to many of my peers.

MC: Top 3 reasons why one must attend Doctors 2.0?

Kerri: It’s a global showcase of developers, marketers, pharma, and patient voices, joining together in pursuit of better health.  Go to share your story, connect with others, and move the needle on improving health outcomes.  Or at least that’s why I was there.

Marie: You will learn so much from the top international innovators in healthcare. You will make valuable new connections and business opportunities. You will strengthen online ties with your peer community

MC: What makes Doctors 2.0 such a strong community?

Kerri: Even though so many of us come from different backgrounds and levels of involvement in the healthcare sphere, we’re united by a desire to make a difference, and to make lives better.

Marie: The community is varied, innovative and cutting-edge. It has a truly international and dynamic feel and above all it is inclusive, bringing stakeholders, patients, healthcare providers and researchers together on one platform.

MC: Describe your life as an ePatient?

Kerri: My life as a person with diabetes began 27 years ago, upon diagnosis and receipt of my first injection of insulin.  (I’ve had 30,000 injections since, with no end in sight.)  For years, I didn’t have any connection with other people who had diabetes, and dealing with diabetes sometimes felt isolating and overwhelming.  Thanks to the suggestion of my then-boyfriend and now-husband, I started a blog at www.SixUntilme.com in hopes of finding other people with type 1 diabetes.  Within a week, I had found another person with type 1.  And within a month, I had access to a whole community.  Chronic illness has a way of feeling very isolating, but the power of peer-to-peer connections can improve health outcomes in ways I had never imagined.

Marie: Someone asked me recently why I still call myself a patient when I am no longer in treatment, and I think this points to how broad the concept of ePatient is. I still consider myself a patient, because even though it has been 9 years since I finished treatment for cancer, I live always under the shadow of the disease.  I want to keep myself educated about the latest research. I want to be empowered with that information should I face another diagnosis of cancer.  And I want to be able to pass on this knowledge to others. It is very important to me that I use my knowledge to help others. I am on the board of Europa Donna Ireland – a patient advocacy group which is part of a pan European breast cancer coalition. I am also an active participant in Twitter healthcare chats and co-founded #BCCEU, a European breast cancer chat. I am regularly invited to speak at international healthcare conferences and I have published research on cancer survivorship.  Even if cancer never enters my life again, I can be pretty certain there will be some illness to deal with, either for myself, or for my loved ones. As an ePatient I am learning the skills to deal with many health challenges,  including where to find reputable medical information, how to ask the right questions, how to speak up for myself and my needs, and how to find support online.

MC: What can physicians really do to improve the life of the ePatient?

Kerri: I wish more healthcare professionals would see diseases and illnesses in the context of real life, acknowledging that the patient is more than lab work and protocols.  As a person with type 1 diabetes, my blood sugars are impacted by food, insulin, exercise, emotions, and a host of other variables, many of which are out of my control.  Having a doctor who not only acknowledges those variables but who also helps me work through them instead of blaming and shaming makes a positive difference.

Marie: The number one thing they can do is listen to the patient with compassion, empathy and respect for the diversity of needs and experience within their community of patients.  I encourage doctors to treat patients as equal partners in achieving better health outcomes. Don’t assume patients don’t understand medical information. Don’t discourage them from finding out more about their illness by researching online. Instead help steer your patients to reliable online sources of information, or create the information yourself.

MC: Is medical culture changing for the better?

Kerri: I hope so.  Patients are raising their voices, which is a long, overdue advocacy change for the better.

Marie: I would describe the changes we are seeing now as akin to a healthcare revolution, not just in terms of technological advances, but also in terms of shifting attitudes and expectations.  The era of medical paternalism is over. We are moving in the right direction of patients understanding more about their health and taking more responsibility for it. Patients are less accepting of the dogmatic physician who takes the cookie-cutter approach to treatment, doing things the way they have always been done. They are more likely to question whether the evidence supports the intervention and to bring their own information to the consultation.   While we still acknowledge the expertise of doctors, we are moving towards a greater recognition that the patient is also an expert in their own disease, particularly when it comes to every-day coping strategies.

MC: Can you describe an ePatient challenge you’ve managed to overcome? And how?

Kerri: Sharing personal health information on the Internet is something I worry about, because it opens me up to critiques from well-meaning (and sometimes very ill-intentioned) people I may or may not know.  It adds a new layer of complexity to an already intense disease.  But being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.  The benefits of sharing our stories far outweigh the risks.

Marie: My experience as a young woman with a diagnosis of breast cancer was one of feeling disempowered when it came to making a decision about my reproductive future. I lacked the basic information I needed during the critical window of time I had to preserve my fertility before I began my treatment.  I resolved when I finished treatment that I would make sure no other young woman would face the same lack of information I had. I gathered a team of oncologists and reproductive specialists together and produced a booklet on breast cancer and fertility, which is now the standard patient information resource given to younger women at breast cancer clinics in the country in which I live. Even now 9 years after my own experience, the issue of fertility is not being addressed adequately and I am still working to change this. I joined an OncoFertility consortium which has produced a standardized protocol for best practice in this area.

MC: 3 tips on how not to be defined by your illness?

Kerri: The tagline on my website is “Diabetes doesn’t define me, but it helps explain me,” and I stand by that statement.  Diabetes doesn’t own the whole of who I am, but just explains some of things I do, or appointments I make, or medications I take.  Even though I was diagnosed as a small child and didn’t have a true sense of “self” before diabetes became part of my life, I know it didn’t make me who I am.  I’m more than the blood glucose result on my meter, more than the sum of my carbs, more than diabetes.

  • Avoid the temptation to give into feelings of helplessness. Instead take control of your illness by learning all you can about it and how to manage it.
  • Don’t let your illness be an excuse not to do the things you’ve always enjoyed doing. Learn how to exercise, to socialize and to eat healthily within the constraints of your illness.
  • Remind yourself you are so much more than your illness. Commit to living your life as fully as possible even with your illness.

MC: You are a writer, does this medium help you deal with your illness? If so how?

Kerri: Writing has been a great source of free therapy for me, and always has been.  I’ve kept a journal since I was seven, and most of the time, I didn’t write about diabetes, but for the moments I did, it was cathartic and helped me untangle the knots of my emotional response to diabetes that would take root in my head.  I manage my diabetes best when my mind is settled, and writing helps achieve that sense of peace.

Marie: Cancer can be a frightening and lonely experience. Having your story heard and acknowledged can go a long way towards healing.  Being able to express my fears and feelings through writing was a powerful release mechanism. Writing gave me a certain distance from the experience and thereby helped me make sense of it. Much of my writing about cancer took place through the medium of blogging which adds another dimension to the process. Getting feedback from readers gave me a different perspective on many aspects of the illness.

MC: How will healthcare evolve in the future for ePatients? What excites you most?

Kerri: Online patient communities of all kinds are supporting patients and empowering them to take control of their health. These anecdotes will become part of the eventual proof that peer-to-peer support can contribute to an improved emotional state and improved health outcomes, giving people with diabetes hope that there is a healthy, fulfilling life to be found after diagnosis.  This is part of the evolution of healthcare, where the patients are empowered, and encouraged, to live well.

Marie: I envision a future in which patients will have greater control and influence over their own healthcare; one in which the patient is valued as a co-creator of health and emerging patient-centered technologies will improve healthcare engagement, co-ordination, integration and delivery. I am happy that the patient voice is being heard. It is wonderful to see more patients speaking at conferences, more patient participation in designing clinical trials and research, and most recently, patients invited to become peer reviewers with the British Medical Journal. I am most excited that we are moving away from medicine being a one way narrative, to a more inclusive, global and participatory dialogue. In the words of the Pulitzer Prize winner Thomas Friedman, “the world is flat”.  We are seeing the increasing democratization of information and a leveling of the playing field not just in business, but in healthcare too.  The Information Age is collapsing the boundary fences around previously closed information domains such as medicine. Open access is reaching a tipping point -a European Commission report last year found that patients can now gain access to citations of more than 12 million medical articles online.

To hear more insights like this join us on June 5-6th at the beautiful Cité Internationale Universitaire de Paris. With two days of 20 parallel sessions, ground-breaking speakers and the plenary, the conference will explore how physicians use new technologies, Web 2.0 tools, and social media to communicate with other health care professionals, patients, payers, pharmaceutical companies and public agencies. This is the best networking platform for digital physicians in Europe.

 Click here to get your early bird tickets!