11 posts from June, 2013

Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Posted June 22nd, 2013 by

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here.

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What did you have to do to get on a transplant list? Did you have to meet certain criteria?
[Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few.

Can you talk about your “phones at the dinner table” policy and how it changed?
[Sarah] Phones allowed at the dinner table. Most families discourage this, as it is always nice to have the family come together at the end of the day and talk about their day. The one time when people are tuned to each other as opposed to their devices! Once Keith was placed on the list, we were waiting for that call to come which would signal the next phase of our life. This meant that our phones were even MORE attached to us, and yes, were placed on the dinner table until that call came.

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How are you doing post transplant?
[Keith] I feel fantastic! Being able to breathe with deep breaths every minute has been the most life changing experience for me. I am still sifting through a bit of a fog with some pain medications but as they are reduced, I find myself feeling more and more enthusiastic about what lies ahead. Each day is a gift, and I am enjoying my “bonus round.” The realities of transplant are such that we never know what tomorrow will bring, so I am living my life to the fullest every day that I am here.

What’s the one thing you both think every rare lung disease patient should know?
[Sarah & Keith] There is hope. With awareness we can educate people on the necessity to be organ donors, which can ultimately get rid of the list! The transplant program at Toronto General is exceptional and if you do what they tell you, take care of yourself and do your physio…there truly is hope for a better life with new lungs. The hospital’s goal is to help you through your disease in any way possible, and transplant is the last option, but if you need it, this is the place to be.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.


Partnering with patients: An interview with Michael Evers and Ken Getz

Posted June 20th, 2013 by

PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) recently announced a new partnership with the global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials.

Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe, and Ken Getz, Founder and Board Chair of CISCRP and an associate professor at the Tufts University School of Medicine, share their views on why spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge) and increasing awareness about clinical trial opportunities will help get the best medicines to patients faster.

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Michael Evers                           Ken Getz

 

What’s this partnership all about?

ME- Given our missions and beliefs in the power of clinical research, it simply made sense for our three companies to collaborate. It’s an exciting alliance – and the first for PatientsLikeMe where we’re partnering with a pharma leader like Sanofi and a nonprofit like CISCRP to do a widespread awareness campaign on the power of research participation. For example, with our 200,000-member community and Clinical Trial Awareness tool, we’ll be able to match patients with relevant Sanofi trials and work with CISCRP to provide educational materials about the clinical trial process. Similarly, our partners are interested in directing their clinical trial participants to PatientsLikeMe where they can use tools to better manage their disease while participating in real-time research every day. Like I said, there was a lot of synergy here.

KG- We all share the same goal – to empower patients with information that helps them make informed decisions about whether to participate in clinical research and ultimately to ensure that the right treatments make it to the patients who need them in an efficient manner. This partnership is really about an integrative approach to empowering patients through closer collaboration with research sponsors, patient networks and a nonprofit educator.

 

Can you tell us a little about these “Medical Heroes?”

KG- CISCRP launched this groundbreaking public service campaign back in 2008 to portray the image of the clinical research participant as a Medical Hero. The Medical Heroes campaign provides recognition for the profound “gift of participation,” while raising awareness of the participant’s significant contributions to advancing public health. Clinical study volunteers are medical heroes found in ordinary, everyday places. Even though they advance public health, these medical heroes are under-acknowledged and under-appreciated.

ME- The Medical Heroes campaign that CISCRP has developed is so powerful. It’s an inspirational way to show how people’s participation in clinical trials is such a selfless gift and crucial part of advancing medicine for everyone. What struck a chord with us is how well this campaign described many of our members – those who participate in real-time research every day by logging onto PatientsLikeMe and sharing data about their experiences.

 

What else do you want people to know about this partnership or what’s ahead?

KG- It’s widely known that clinical trials are less efficient and are taking longer to complete. Patient recruitment and retention is extremely challenging and a major contributing factor to study delays. The main goal of this collaboration is to leverage the power of interactive communities with outreach and educational materials to truly engage patients as partners in advancing medical knowledge. Ultimately, we hope that this collaboration will demonstrate a new approach to improving recruitment and retention rates and to help reduce study delays. The patient is waiting for new and better treatments – and expects this from all of us.

ME- Ken said it well – this is all about engaging patients as partners. That’s the only way we can get to better research, better treatments and better medicine. The more Medical Heroes there are contributing to research, the faster we can get there. That’s a win for everyone.