6 posts tagged “patient advocate”

“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

Posted February 24th, 2017 by

“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune.

The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed up with a piece in The Washington Post called “I told the truth about my sister’s obituary, so that others might choose to live.”

We recently talked with Eleni, who is an associate professor of psychology at the University of Wisconsin-Superior. She shared more about her sister’s life and struggles, the stigma surrounding mental illness and her own experience with managing depression.

You and your sister were really close. Do you have a favorite memory about her that you can share with us?

One of the things that somebody said to me at my sister’s memorial was that when you were with Aletha, it was totally okay to just really be who you were and let your freak flag fly. I think that was really true; Aletha took people as they were.

One of my favorite memories of her was when were adults and we went on a vacation to Harry Potter World and we were at Universal Studios. And at Universal they have the Jurassic Park theme ride. We were there in January, and the Jurassic Park ride was a water ride. So it was relatively chilly and we just rode it over and over. We stayed at a park hotel so we were allowed to skip to the front of the line. We were soaking, it was absolutely freezing and we were sitting in the ride being like, “Oh this is so lovely” – just being really silly. It was a really fun experience and it just felt nice to be with my sister in that way.

When you started “telling the truth” about how Aletha died to family and friends, how did people respond?

My family is relatively small — my parents and I, and then we have some cousins, some aunts and uncles. But we aren’t a terribly a close, close family. My parents were on board right away…it wasn’t something that was surprising to them. And for me, personally, I was in a lot of shock, so it seemed like the natural right thing to do. A lot of people were really, really surprised. When I told one of my friends, she at first didn’t believe me.

So a lot of times I think people were just in disbelief, but that might also have happened if Aletha had died in a car crash or something. In general, I think from my friends and her friends and our family, there’s just an outpouring of love for Aletha and my nuclear family. My coworkers were just incredibly supportive. And then I started hearing from people who’d read the obituary, and they were all just wanting to be heard. I think people don’t often listen to people who have depression or are suicidal or have survived suicide attempts.

And how about when your essay was published, what kind of feedback did you get?

Being a public employee, it was very easy to find my email address, so I got between 400 to 500 emails from people I didn’t know and probably about that many Facebook messages from people I didn’t know. It really hit something. There was something there that people really wanted to talk about – suicide and depression – and I think this gave them an avenue to either start the conversation with a stranger or hopefully to talk about it in their own lives.

What do you think needs to happen so that people can have open, productive conversations about suicide and depression? What’s standing in the way?

I think a lot of it is: people don’t really feel safe bringing it up because they think that there is going to be some judgment, and in some non-guarded moments, I have heard of some judgments.

My friend is an English teacher, and once a week they’ll read articles from the news and the students will write reflections on it. And so she did that with some of the coverage about my sister’s death. And it was really interesting because the students didn’t ever think I was going to read it. And some of them were really beautiful about the need to reach out and how they really want to support people, but then there were some that were like, “Well, her family must have known something.” Or, “I find it hard to believe that if they really cared about her they wouldn’t have seen this,” or “There must have been something else going on. It couldn’t have just been depression – depressed people don’t kill themselves.”

And so I think people hear that, either casually from friends and family or something else, or they hear the message that suicide is selfish or depressed people just need to “snap out of it.” I think that people are aware that there is a lack of compassion and lack of understanding and empathy for people that deal with those issues, and so there isn’t a safe place. Because if you’re already suffering and already struggling, and you know that acknowledging that is just going to increase your suffering, you’d be crazy to ask for help.

What other kinds of stigma and misunderstanding surrounding depression and mental health do you think needs to be addressed?

I think it’s just something we have to get more practice talking about because if you think about the sheer number of people who have lived with mental illness in this country it’s really staggering…that in any given year one out of five people experience mental illness. Who that one is out of five, is probably going to rotate. There are people that are going to live with it their whole lives but then there are people that might experience depression and anxiety for a year, and then go into remission.

And I think it’s just a real fear and real sense of isolation. The mental illness plays into that as well. Part of what feeds mental illness is this desire to keep it secret because you don’t want other people to find out, and that kind of stuff. So it’s really just a perfect storm of disordered thinking and the stigma together that just makes it really difficult for people to come out. So I think there needs to be a national-level dialogue about it.

And that was one of the reasons why I just absolutely loved Carrie Fisher. She was bipolar and she didn’t really care who knew it, and she saw it as a part of her and not something she should be ashamed of, not something terrible. I really admired her, and even though I didn’t know her, that loss hit me. Because here you had someone who was smart and funny and engaging and open about it. I think we just need to have more people say, “This is my experience with mental illness. I’m not crazy, I’m not bad, I’m not going to do anything horrible, I’m just really suffering.” Hopefully other high-profile people will step up and say, “This is something I struggle with as well.”

And that’s one of the reasons why I try to advocate for person-first language: you’re not a “depressed person,” you’re a “person with depression.” Embracing person-first language is really critical to helping people see you’re not just bipolar disorder, or schizophrenia, or depression, or OCD —  you’re a whole person, and this is one part of who you are but there is so much more to you that that. I think that’s where suicide works its way in. The depression or mental illness takes over to point where the person loses their sense of personhood and overwhelmingly identifies with the disorder instead of their shared humanity.

You’re also living with depression — how do you cope with depression’s “lies” in your own life?

For me, a lot of it is managing through routine. The way that my distorted thinking happens is, “Well, it doesn’t matter if you don’t exercise today. It doesn’t matter if you don’t shower today. Everybody deserves a break. You can just take this one day off.” And the problem is once that happens, inertia sets in, and I’m less likely to do it the next day and the next day.

So it’s really critical for me to say that every single thing I do in my life, especially when I’m struggling, matters. It matters that I decide to get up and eat breakfast. It matters that I decide to eat a healthy lunch, that I eat dinner. It matters that I walk the dog. It matters that I do something other than just sit around and watch Netflix.  I think that’s the lie: “You deserve a break, you deserve to not have to worry about anything.” That just makes it so much worse. For me the lie is just: let the depression win for a day. And then tomorrow you can get back to being good…it just keeps getting pushed further down the line, so I’m not engaging in my self care, I’m not doing anything to show myself that I matter or anything. So that’s where it can really spiral in a bad way, if I’m not doing anything, if I’m isolating myself from my friends and not seeing anyone as much, not talking to people. And it just takes me to a really not great place.

What kind of advice do you have for people living with depression who use online communities like PatientsLikeMe?

I think the best thing that people can do is to figure out what makes them feel a little better. And commit to doing that for themselves. When I think about my sister and when I think about myself, I’m always willing to do something nice for my husband or my parents or my students, always willing to try and help them, but I’m not always willing to do that for myself. So I know that nothing will make me feel better for several hours than going and getting my heart rate up for a half hour, 45 minutes, an hour. I know that nothing in the world will be better. But then I’m like, “Oh, well this student really needs the support,” or something else, so I neglect that. I think sometimes it’s okay to say, “I really have to do this for myself, because otherwise I’m going to go to a not great place.”

Everyone is really good at advocating for the needs of others, but identifying your own needs and speaking up for them is probably the most important gift you can give yourself, because then you can start to counter this idea that all you are is your mental illness. You’re starting to do something for yourself, you’re starting to prioritize yourself and prove to yourself that you really matter, and I think that’s really critical.

After my sister passed away, one of her friends said that he felt that Aletha was like a watering can. She was always watering her other friends and nourishing them and helping them grow, but all of that was depleting her and taking away some of her resources. So once her water ran out, she didn’t know what to do next. She didn’t have a way to deal with that and cope with that. You have to prioritize yourself.

 

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Getting “Patients Included” right Part II: Planning a patient-centric event

Posted November 18th, 2015 by

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.”

While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities.

Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste is also a board member on the inaugural PFPC and helps review potential projects from a patient and family member viewpoint.

“The way KHI works is that it brings everyone to the table – researchers, industry professionals, patients – and we ask what is it that we can do to improve research and clinical trials and ultimately, patient lives. We do this through specific projects like this workshop,” she says.

Involving patients from the get-go

As part of this particular workshop, KHI wanted to hear patients’ ideas and preferences on new devices to manage kidney disease. Before anything, though, they had to create an event that would provide the greatest value to patients that attended in person.

When we asked Frank and Celeste what goes into planning an event like this  they shared how they think it can be centered around the patient:

“Involving patients early helped us to realize the need to broaden efforts to educate patients on the topics of interest prior to having the workshop. This proved to be a critical step in the planning process,” says Frank.

“We realized it would save time to educate prospective attendees about the new devices via webinars before the workshop,” explains Celeste. “We ended up taking a three-step approach that started with a quick engagement video talking about what we wanted to do. We distributed this throughout the whole kidney community. At the end of the video, there was an invitation to sign up for the webinars. After the webinar we said – now we are going to have a day and a half workshop and we will provide travel grants. Over 50 travel grants were given, funded by KHI so patients could come from all over the country.”

Frank notes, “Although patients are medical device consumers, they rarely have an opportunity to influence products that come to market. The success of a new medical device is based on many factors, including the usability by patients. KHI provided a forum, which allowed stakeholders to hear about ideas and potential solutions directly from patients.”

Looking at it from all angles

While the main consideration was making sure KHI had set clear expectations to patients who attended from the onset, there were additional logistics to consider for the workshop to be as patient-centric as possible. The workshop agenda was arranged around patient treatment schedules and incorporated dietary considerations when planning the menu. Because some attendees are on dialysis or live with transplants, they needed volunteers on hand. KHI planners also made sure to ask for patient feedback throughout the entire event and had scribes in position to record it. This feedback was ready to be shared at the workshop’s closing and will be sent out in an executive summary as well.

“Patients especially enjoyed the small group sessions,” Frank says. “These were multi-stakeholder breakout discussions which tackled important questions such as unmet needs, device areas that need improvement, making clinical trials more patient-friendly, and assessing ways for patients, industry, and regulators to communicate and share feedback.  These sessions included many lively discussions where patients felt empowered to share ideas and come together to propose solutions.”

Patient advice for a patient-centric event

Celeste has simple advice for other organizations that want to have this level of patient inclusion in their events. “I think you start off with a really good planning team that includes patients so that they’re there to help figure out the challenges of bringing that population together. Most importantly – you need to prepare people to be a part of it. You’re not going to get anything of value if people come in cold. It’s about the patient being able to draw on their experiences to help move research forward so if they understand what’s expected of them going in, then the outcomes will be more valuable.”

Frank adds, “It is also important to consider the spectrum of the disease, and ideally include patient representatives from across the spectrum as they could have very different needs.”

“Then,” Celeste says, “the next step is getting them to share the developments within the greater community. Once patients are educated and engaged, they become empowered.”

For a look at the KHI’s 3-step plan, check out this presentation they shared with us! And of course, don’t forget to visit the site and connect with the more than 1,000 other PatientsLikeMe members living with chronic kidney disease.

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Posted November 4th, 2015 by

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea of “Patients Included” – a movement started back in May to involve more patients on the planning committees, stages, and in the audiences of medical conferences.

Sally Okun, our Vice President of Advocacy, Policy and Patient Safety spoke at the event and notes how patient-focused the entire workshop was in that “nearly 100 people among the approximately 150 who gathered for the event were patients living with and managing kidney disease every day, many joined by their caregivers.”

“The patients were very open in the discussions and direct in their questions. Many talked about their experiences with hemodialysis and how difficult it is to live a normal life when one has to be at the dialysis center three days a week for many hours,” she says. “In contrast to the conventional treatment approach, the newer developments for hemodialysis at home were very interesting, and in general, patients felt more in control.”

She concludes, “The KHI did a remarkable job focusing this meeting on patients and their caregivers, and providing resources to cover travel expenses. They should be commended and looked to by others as an example of getting ‘Patients Included’ right.”

PatientsLikeMe members Samantha-Anne (internettie) and Laura (Cherishedone) both received stipends to attend the workshop. We asked them about their experiences and here’s what they said:

Why was it important for you to attend this workshop event?

S: It is important to me as a patient to have a voice in my care and treatment. It was particularly important to me to attend this workshop because I wanted to be a voice for the patient who has not yet arrived at the need for dialysis or transplant and to ask what we can do to prevent chronic kidney disease (CKD) from progressing if possible. I know that not all cases can be prevented, but there are some that can. In my situation, my CKD was caused by the use of nonsteroidal anti-inflammatory drugs (NSAIDs). If the consequences of using these drugs for such a long period of time had been made clear to me and if I had been offered some alternative treatments I may have made different treatment choices.

L: I have always been strongly committed to advocating for myself and others, and being given the opportunity to participate and then bring back the information to others whose lives are impacted by CKD and/or end stage renal disease (ESRD) equips us with insight to better advocate for ourselves.

Is this the first event like this that you’ve attended?

S: Yes, this is the first time that I was offered the opportunity to have a voice in patient care. It certainly will not be the last.

L: I have attended National Kidney Foundation (NKF) meetings with other patients and also participated on NKF committees (Patient and Family Executive Committee).

How did you feel about the focus on patient-centricity at this event?

S: I was thrilled to know that someone cared about what patients have to say about their own care. I think that with the advent of the Internet and patients having more access to information that they are more involved in their own care. Patients know more and want to know more about what illnesses are affecting their bodies and they also want to know what they can do to prevent some of these conditions from happening in the first place.

L: The patient-centricity was one of the most valuable components of the meeting. I am one to be very involved in giving back, but I would guess that for many, their disease leaves them feeling isolated. For this population to meet others who are not only surviving but thriving is very important. My hope is that many participants were encouraged to not let their CKD/ESRD define them, but rather to use it as a vehicle for being empowered and encouraged to live each day to the fullest extent, not be left feeling like a victim to the disease.

Did you feel like they supported you and listened to you while you were there?

S: I absolutely felt like I was listened to at this workshop. I had an opportunity to talk to so many people on all different levels of health care. I had wonderful conversations with Paul Conway (AAKP), Mark Ohen (Gore), Denny Treu (NxStage), Sally Okun (PatientsLikeMe), Prabir Roy-Chaudhury, MD, (ASN) Frank Hurst, MD (FDA), Francesca Tentori, ME (ARCH), and F.P. Wieringa, PhD (DKF). We all had the shared topic of kidney disease to discuss but I was amazed at how many people I had other areas in common with. Paul Conway knew my new hometown of Waterville, Maine, and Denny Treu was familiar with my former home in Colorado Springs, Colorado. I feel like my love of research and my desire to learn new things and to share my experiences made this conference a catalyst for me to not only offer my view but to be asked to participate in conversations that I would not be privy to otherwise. I felt like I was engaged in the process and made to feel that my opinion was valued.

L: Most definitely!

What stood out to you as an attendee?

S: What stood out to me the most was that these doctors and vendors really wanted to hear what the patients had to say. I never felt like someone was asking for my opinion just to be nice or listening just to be polite. They seemed fully involved in what we, the patients, were saying. Being heard, as a patient, is honestly such a rare thing that to have people in places that can make life-changing decisions about our care hear what we have to say, is amazing.

L: Hearing about research that is ongoing as well as new technologies was very empowering, and left me feeling very encouraged about options available to those of us who have reached ESRD.

What was the most interesting takeaway for you?

S: As a patient the most interesting takeaway was that what I think and what I say really does count. As a person who loves research and used to do surveys and metrics for a living, the most interesting takeaway was that taking the time to craft a meaningful survey for patients is important. Turning data (survey results) into action (making a difference for the patient) is key.

L: Hearing about research that is ongoing for new technologies and ways to treat ESRD was most exciting.

What was it like to be able to interact with other patients who were attending?

S: It always helps to know that you are not alone. Even though we all have our own individual paths and we all fall on different places on the CKD continuum, we all have so much in common in how we feel and how we need to be heard. We can laugh at things that other people just would not understand. Kidney disease is not funny, but there is always some humor to be found in any difficult situation and being with like-minded people is good for the soul. Every single patient in that room is a hero. We all have a lot on our plate but we mustered up the strength to get ourselves to that conference to not only help ourselves but to help all those who come along after us. I know I was completely energized by being around everyone and at the same time could feel the drain of the illness that I deal with every day. It was worth every bit of energy it took to be there in Baltimore and I feel incredibly grateful that I was offered the opportunity to attend the conference. I made sure to thank everyone who played a role in getting me there and also to thank the other patients for sharing their stories and their thoughts and ideas.

I have been in my new community, Waterville, Maine, for about 2 1/2 months now. Going to the KHI conference in Baltimore made me realize that I need to be involved in my new town. I found a group walk in the downtown area (Waterville Walks! hosted by Waterville Maine Street), I attended a public health meeting as a member of the community (Healthy Northern Kennebec), and I participated in a workshop down in Hallowell, Maine at the Harlow Gallery (Healing Through Art: Confronting Your Inner Critic). My goal is to find out as much as I can about the resources that are available in this area. I understand that input from members of the community really is important and that the people asking for the input want to hear what people have to say. I am not surprised that so few people attend these community events thinking that they will be boring or useless, but I am doing my part to let everyone I cross paths with know that there is a lot to do out there, that there are unlimited ways to get involved, and that if you keep looking and put in some effort the resources can be found. I am grateful that the KHI conference has opened so many doors for me.

L: I love the interaction with other patients, and the opportunity to both learn and encourage others. I think it was important for many patients to feel they both have a voice and that our collective voices were not only being heard, but welcomed.

Stay tuned for Part II of this blog when we chat about what kind of planning it took to make this event as patient-centric as possible with those who ran it. And don’t forget to visit the site to connect with Samantha-Anne, Laura, and the nearly 1,000 other PatientsLikeMe members living with chronic kidney disease.

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The Importance of Open Access: An Interview with Patient Advocate Graham Steel

Posted July 9th, 2012 by

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

Patient Advocate and Open Access Supporter Graham Steel

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

The Logo for the Open Access Movement

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

John Wilbanks Speaking at TED Global.  Photo Credit:  James Duncan Davidson.

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”


Today’s Photo: Raising Epilepsy Awareness on the National Mall

Posted June 18th, 2012 by

Summer is here, and that means there are disease-related walk/run events happening all around the country!

For inspiration, please meet epilepsy patient Monica (second from right), who led a PatientsLikeMeInMotion-sponsored team at the National Walk for Epilepsy in Washington, DC.  Held on March 31, 2012, the two-mile walk occurred between Madison and Jefferson Drives on DC’s famous National Mall.  “I do a lot of fundraising on my Facebook page, so my friends and family all know I have epilepsy,” says Monica.

PatientsLikeMe Member Monica and Team on DC's National Mall

Congrats to Monica and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.


Let Patients Help: The Undying Mission of E-Patient Dave

Posted July 18th, 2011 by

“Patients know what patients want to know.”
Dave deBronkart

Bloggerauthor and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.

You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.

Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.

To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below.  (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” another core value of our company.  Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)

Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment.  “The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,'” he says.   “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment.  And when my side effects hit the first was uncontrollable chills and shaking I knew what is was.  I knew what to expect, and I knew how other patients like me had gotten through it.”