21 posts tagged “The Patient Voice”

PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

Share this post on Twitter and help spread the word for IPF, epilepsy and patient-centered healthcare.


The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

Posted August 3rd, 2014 by

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant, she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)

 

 

What was your reaction when you got ‘the call?’ You mention a whole range of emotions on your blog.

The call took me completely by surprise. I’d been admitted to the hospital a week earlier because we just couldn’t meet my oxygen needs at home any more. I was literally 10-minutes away from starting a procedure to suppress my antibodies (to help increase my somewhat slim chances of finding a match) when the nurse walked in and told me they might have lungs for me.  Actually she said they “might, might, might, might, might” have lungs – normally they wouldn’t have contacted me that early in the process, but they had to cancel my procedure just in case. I felt an initial jolt of adrenalin and couldn’t help busting out in a huge grin. I quickly tamped down my euphoria, though. There was still a long way to go and anything could happen.

An hour later when I heard we were moving forward, I burst into tears. A year’s worth of pent up emotion poured out through those wracking sobs. I couldn’t believe my miracle was so close. But wrapped up in my joy was guilt that my chance to live was coming through the death of another.

Until the moment they put me under, my emotions continued to cycle from near manic joy, to fear that the lungs wouldn’t be right, to anguish for my donor and his family. Everyone says it’s a roller coaster, but like parenthood, you can’t really understand what that means until you live it.

What happens between getting the call and going into surgery?

Since I was already in the hospital, there was no mad dash for me. When the team decided to move forward, I was sent down for pre-surgery testing — a chest x-ray and blood work. Then we waited, and waited for a good 12 hours. Finally I was sent down to pre-op at 2:00 AM to get ready for surgery at 3:00. They inserted an arterial line and an IV. And they checked and rechecked my drug allergies and medical history. I was the only person in pre-op, but I still had to recite my name and birth date for everyone who came by!

My surgeon arrived and told me he’d heard about my surgery early enough to make sure he got a good night’s sleep with plenty of time for breakfast. I’d brought a disposable camera to get pictures during surgery, so he talked me through his typical “shot list”. I couldn’t wait to see those beautiful new pink lungs!

Just before I was to head to the OR, the doc got a call from the retrieval team that we were delayed for an hour. He said this was very common — they had to wait for all of the teams to arrive before they could start. We were delayed twice more as teams continued to fly in. When I finally made it to the operating room, I was surrounded by people and equipment. They explained each step as they got me situated on the table, and then the anesthesiologist placed a big mask over my face. Thankfully, I remember nothing until they removed the breathing tube three days later.

Fifteen weeks post transplant – how’s recovery and rehab going?

Full recovery takes about a year, but I am astonished at how far I’ve come in just three months. I went into surgery pretty weak because I didn’t have the energy (or the breath) to move much.  A lot of people told me to keep my legs as strong as possible and I quickly learned why. Post-surgery, I was on high-dose prednisone, which is very hard on the quadriceps – my thighs felt like jelly. Most people are up and walking shortly after their breathing tube is removed. I ended up needing a trach, so it was about a week before I took my first steps. I walked nearly 200 feet that first day and increased my distance and strength every time I hit the halls.

The day after I left the hospital, I returned for my first out-patient rehab appointment. I walked 15 minutes on the treadmill at a smokin’ 0.5 mph. Within a few days, I was up to 30 minutes and started to increase my speed. Now I’m walking two miles a day around the neighborhood and am working hard toward a 15-minute mile. It’s the hardest work I’ve ever done, but it is so worth it!

The one thing that really took me by surprise was the mental part of rehab. Before transplant, my body worked very hard to breath.  Shortness of breath meant my body needed more oxygen. But after transplant, neither one of those was true anymore. It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.  After a week, I would periodically “forget” to breathe and be surprised to discover my lungs were working just fine. When I was walking laps around the halls, I would periodically get short of breath and start to panic – there was no valve to turn up my O2!  The pulse oximeter showed my sats were well into the 90s. I was short of breath because my body was weak, not my lungs. Thankfully, breathing is once again second nature!

What comes to mind when you think back on everything you’ve gone through – diagnosis to transplant?

I went through the same fear that most people do when they are diagnosed with IPF. The prognosis is pretty bleak: no treatment, no cure, progressive. But I decided early on that I was going to live my life as normally as possible – and do everything I could to prepare myself ready for transplant.

I continued to work for nine months, using oxygen at the office. But after two pneumonias, it was clear that my body was too fragile for the daily grind.  Without work distracting me, priorities and perspectives shifted. Everything suddenly had a sense of urgency. There might not be time “some day” to get back in touch with that friend, or tell my brothers how much they really meant to me. I had to let go of the things that had consumed me, like worry and regret, so I would have time and energy to do work on my life “to do” list.

I worried that after transplant, when things returned to normal, I would soon forget the lessons I’d learned. This whole experience has been a journey toward gratitude, and I realize now I will never be the person I was before – physically, emotionally or spiritually. Every morning I give thanks for my first waking breath. Throughout the day, I find the most delightful surprises – like watching a mama squirrel move her babies to a safer home. And sometimes I just stop and marvel at the air passing in and out of my lungs, lungs that once breathed in someone else’s chest. I spent three years quietly saying goodbye to all the things and people I loved. Now I get to spend the rest of my life saying “hello” again!

Additional comments from Lori

We just returned from our celebration trip to Sanibel Island, one of my favorite places in the world. For the first time since my diagnosis, I was able to walk the beach without tanks in tow. The image of Sanibel’s shell-strewn beaches and the memory of that rich briny air kept me pushing forward as first I struggled to breathe in ICU, and then sweated my way through PT and rehab.

At least once a day while we were there, my husband whispered to me “No oxygen”. It felt like a dream, a wonderful, amazing dream. We’ve been going to Sanibel for 25 years. It’s a huge part of our family tradition, and making it back there was an important milestone for me. A plaque on the wall at our beach condo read “If you’re lucky enough to be at the beach, you’re lucky enough.” That’s pretty much the way I feel about everything now!


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

Share this post on twitter and help spread #dataforgood.


The Patient Voice- Fibromyalgia member Becca shares her story

Posted May 28th, 2014 by

 

What does sharing about health experiences and donating #dataforgood mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca

If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


TEDMED 2013: Creating and experiencing wow!

Posted May 2nd, 2013 by

One word comes to mind when describing my recent experience at TEDMED 2013 – WOW!  Held annually at the Kennedy Center in Washington D.C., TEDMED is a conference unlike any other. For 3 ½ days you are immersed in the ideas and creativity of people from around the world who bring diverse perspectives to some of our greatest challenges in healthcare.

For me it was especially awesome because I contributed to the ‘wowness.’ I had the privilege of being a TEDMED 2013 speaker – in fact, I was the first nurse to ever take the TEDMED stage.

Screen Shot 2013-05-02 at 2.25.35 PM

My talk addressed the question “Does anyone in healthcare want to be understood?” At first glance the answer to this question seems obvious – “yes, of course we all want to be understood.” However, if you consider how many words used in healthcare are Latin or Greek, insider jargon or acronyms, the answer is not so obvious after all.

I reminded the audience that the language of health is missing the words and experiences of those we say are at the center of healthcare – patients. It’s time to move beyond the rhetoric of patient-centeredness to actually include the lexicon of patients in the language of health.

Lexicon

At PatientsLikeMe we have been doing just that for many years. We retain the words and phrases patients use to describe their symptoms and side effects while behind the scenes we match them to the words used by doctors and health professionals. With your help, we are creating the world’s first patient vocabulary.

By the end of my talk I offered the answer to the question “Does anyone in healthcare want to be understood? Yes, patients want to be understood.”

It’s time to humanize the language of health with the lexicon of patients.

Sally Sign off


Psoriasis in Fall: What We’ve Learned

Posted December 7th, 2012 by

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

Check Out the Fall Psoriasis Survey Results

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

How Our Survey Respondents Cope With Drier Air

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score). Also, discover how many of our respondents get annual flu shots.

The Cover of Our Latest Patient Voice Report on "Uncovering Psoriasis"

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

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Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


The Patient Voice: Exploring New Chapters

Posted January 21st, 2011 by

We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!


Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.


Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

Posted January 7th, 2011 by

epilepsytearsheet08With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.

Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.)

Social Outreach

  • With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotionTM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotionTM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.
  • In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCallTM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCallTM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!

  • Along with PatientsLikeMeOnCallTM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.

Media Coverage:

Throughout the year, PatientsLikeMe was featured in a number of media stories (see our press page) that highlighted how you are making a difference for other patients and the healthcare industry as a whole.  In fact, many of you were able to share your stories with the world – from your disease experiences to your participation on PatientsLikeMe.  Thank you to everyone who contributed!  Some highlights include: Fast Company (“2010 Most Innovative Companies”), Fortune/CNN (“Tweet your chart”), Wall Street Journal (“Scrapers’ Dig Deep for Data on Web”), Fox News videos, Women’s Health (“Feel Sick Click Here”), NPR (“What Happens When People Migrate To The Internet”), New York Times (“When Patients Meet Online”), TIME magazine (“Group Therapy”) as well as articles in Bio-IT World, InformationWeek, Nature Biotechnology, PharmaTimes, and SmartMoney.

Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).

Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010.  Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.

Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe.  2011 will only be better.  Thank you and Happy New Year!

PatientsLikeMe member lscanlon