The power of your data: Improving clinical trials

Posted December 6th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Another example of the impact your data can have? Making the clinical trial experience better for patients like you.

Now let’s be real, that’s no short order. So where do we even start? With you, and every new member who joins the community. Every day, members are sharing their thoughts on trials, what would make them most likely to take part, and what would turn them off. It’s an ongoing research experience, but let’s take a look at snippet of results so far:

4,718 members have taken part so far…

How do you learn about clinical trials?

  • 59% learned about a trial from your health team, 24% via the web.
  • 24% of you said you first thought of participating in a trial without suggestion from anyone else. For those who participated in past trials, the first person to suggest that you participate in a trial was a doctor (43%) or another healthcare provider (19%).
  • Those of you who took part in clinical trials decided to because of your own desire (80%).

Key takeaway: Most people are still finding out about trials through their care teams or providers, but when it comes to actually deciding to take part, it’s your own desire that motivates you.  

What are your impressions of clinical trials?

Side note: These results are just from those that have taken part in a trial.

  • 55% of you were very or extremely satisfied, and 51% would tell other patients about the trial. Not bad, but not awesome.
  • 9% considered dropping out — side effects and worsening of overall health after trial were the main reasons.
  • You said the best parts of the trial were the opportunity to contribute to science and medicine (78%), and learning more about your condition (46%).
  • You said that the worst parts of the trial were the chance of being given an inactive drug or placebo, experiencing negative effects and discomfort with study procedures.
  • Only 38% of you recall being told about the results. Yikes!!! As you know at PatientsLikeMe, we have a give data, get data philosophy. And you can better believe we work with our partners to get on board with that philosophy, too.

Bottom line: Trial results need to get back to those that take part. Period.

Thanks to all who’ve participated and put the patient perspective into improving clinical trials!

 

 

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The power of your data: Members define compassionate care

Posted December 5th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Here’s a snapshot of your data in action.

Let’s talk compassionate care. Our partners at the Schwartz Center for Compassionate Healthcare had developed a scale based on input from 510 patients, 800 doctors and other caregivers to define compassionate care. But they wanted feedback from PatientsLikeMe members to validate this work and make sure it really reflected the patient voice. Every day, members like you team up with us and our partners, adding your experience to help improve measures just like this one.

So, how did it go? First,  members first shared what compassionate care means to them and if they thought the scale could be improved, and then a second group helped to see if the scale measured compassionate care and if it did so consistently.

Here are some top takeaways:

23 members weighed in on the first phase of the project, defining compassionate care.

Quick research insight: you might be wondering, “why only 23 members?” Well, the first phase of a project like this is sometimes called concept elicitation. That’s just a fancy way of saying you’re getting open ended responses from people, and not having them check an answer box. When that kind of research is done, fewer responses are needed to capture the main ideas.

How do members define compassionate care?

  • Many shared that continuity of care and communication between their providers made a difference in whether they felt they received compassionate care.

Need an example? Here it is again in members’ own words:

“I had two surgeries within days of each. Therefore, two different surgeons handling my care. One was incredibly compassionate, the other, not so compassionate.” – PatientsLikeMe member

I believe that too many cooks in the kitchen spoil the soup. I have a PCP, Cardiologist and a couple of other specialists involved in my care. When I get very sick, I am told to go to the ER. No one in the ER knows me and it is frustrating and cannot be safe. Tell a same story to 5 different people and you will get back at the end another completely different story from each one. A person should be able to have their own doctor manage their care, available to take over.” – PatientsLikeMe member

How can this scale be improved?

  • Many understood the questions, but felt they sometimes either didn’t apply to their situation, or they thought that their situation was difficult to summarize.
  • For those with multiple doctors and/or conditions, they found it difficult to decide who or which condition they should evaluate:

“State explicitly who we are rating…the clinician in charge of our last hospitalization or the clinician we normally see to treat our illness.  It is often different people, as it was in my case.” – PatientsLikeMe member

  • While they found the wording of some questions unclear, overall, members thought that the Schwartz Center Compassionate Care Scale did reflect what matters most to them.

For the second part of the research project, we asked members to actually answer and complete the measure. 

163 responded to the questions. How they answered helped us understand if the Schwartz Center Compassionate Care Scale measured compassionate care, and if it measured it consistently.

Leading the way (not always a good thing)

40% responded in the higher, positive range when asked if their healthcare provider “treated you as a person, not just as a disease” and whether they “showed respect for you, your family and those important to you.”

FYI: Sometimes when a large proportion of people answer the same response option on a questionnaire, it may indicate that the question is asked in a way that could lead people to answer a certain way, or it could mean that there are too many response options for a question. We’ll have to do some more testing to confirm if this is the case.

On a solid foundation

The measure was found to have good measurement properties, meaning that the different items seem to “hang well” together and to measure the same concept. Members also answered consistently when asked to complete the questionnaire twice.

Making some tweaks

But there’s always room for improvement, like taking another look at the response options for the questions. It may be that there are too many answers to choose from for the questions. Or the measure could also be improved by adding questions measuring the lowest levels of compassionate care.

The gist of it: Your voice matters in research – whether validating a measure like this one, giving feedback on a potential clinical trial or shedding light on life with your condition – there’s nothing like real patient data to affect positive changes in healthcare.

Thanks to all who participated and put the patient perspective into compassionate care!

 

 

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Crohn’s and Colitis Awareness Week

Posted December 2nd, 2016 by

Image courtesy of the Crohn’s & Colitis Foundation of America

This week is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants you to be #IBDvisible to raise awareness of Crohn’s disease and ulcerative colitis.

Speak out, step up, and stand out. How? Join the movement:

  • Use the hashtag “#IBDvisible” to let the IBD community know you are proud to stand strong beside them
  • Share your story and use your voice to raise awareness
  • Join the CCFA Thunderclap on social media December 7th at 12pm

And if you’re living with either condition, be sure to connect with the 4,500+ Chron’s members or 1,350+ colitis members on PatientsLikeMe.

Let’s be #IBDvisible, together.

 

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Meet Jim from the PatientsLikeMe Team of Advisors

Posted December 1st, 2016 by

 

We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development and change management consultant.

He sat down with us recently to talk about finding appreciation in the “upside-down” reality of life with MS. Below he shares his experience advocating for himself and how he built a strong relationship with his doctor.

What gives you the greatest joy and puts a smile on your face?

Family moments.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Mobility challenges limit what I can do/where I can go. In the U.S. things are pretty good; overseas, people tend to recoil from any appearance/behavior that strays from the “norm.”

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

MS produces a wide variety of often invisible but strange and obtrusive sensations and symptoms that aren’t described in the owner’s manual that came with your body. Creates a new normal and a new sense of reality, and makes life a bit like being an undercover spy.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Take a deep breath. Learn what you can about the condition, but mostly keep your head about you: don’t allow the shock to drive you crazy and/or make you feel that things are worse than they actually are. Learn to appreciate the upside-down ways in which it can help you focus on what’s REALLY important to your quality of life, and take an interest in the unusual ways in which your body can change from day to day, even moment to moment.

How important has it been to you to find other people with your condition who understand what you’re going through?

Actually, this hasn’t been very important for me. I’m much more interested in how the things MS makes me experience give me new/unusual perspectives on life and relationships that others can learn from.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

The oncologist who diagnosed my Chronic Lymphocytic Leukemia was highly recommended to me by my GP based on his clinical expertise. But he came initially across to me as arrogant, cold, in a hurry, and not the least bit interested in helping me absorb the news emotionally. At the beginning of our second appointment, I took him aside, praised his clinical expertise, insisted that, even so, we could only proceed together if he listened to something I had to say, and then — after he signaled his willingness to hear me out — described the kinds of interaction/treatment I would need him to work on if he wished to continue treating me. Over the next several months, I “taught” him how I wanted him to interact with me; he worked at learning, and we eventually became good friends.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It has alerted me to possible new treatments and mobility solutions.

How well does PatientsLikeMe communicate its mission and activities to members and stakeholders?

I somehow missed some of the most unique and valuable things that PLM brings to the table, so I’d like to see the Team of Advisors work with PatientsLikeMe staff to enhance and clarify PatientsLikeMe’s messaging.  

How should PatientsLikeMe make the most of its Team of Advisors? 

A lot more could/should be done to set the Advisors up as a true TEAM (as opposed to a collection of individuals serving as sounding boards) who adopt and pursue their own projects in collaboration with PatientsLikeMe leaders/staff to undertake valuable enhancements to the site and its patient community that might not yet be on PatientsLikeMe’s radar.

What made you want to join the PatientsLikeMe Team of Advisors?

I have personally benefited from interactions with PatientsLikeMe members but also have observed ways in which the site could provide better support and more reliable information. Also, numerous family and friends have harped on how much they admire how I handle my various conditions: I figured the Team of Advisors might be an opportunity to see if I actually had anything to offer that might be of value to other patients.

 

 

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Ryan and Emma’s stories: Make-A-Wish® Massachusetts and Rhode Island

Posted November 30th, 2016 by

Last December, patients like you came together to donate more than 476,000 health data points, including nearly 30,000 treatment reports and close to 120,000 symptom reports. The data that everyone selflessly donated has a heartbeat that will keep on giving – helping other patients like you and accelerating research.

And because you helped us reach our goal, your data also made wishes come true for two children with life-changing medical conditions. On your behalf, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Ryan and Emma take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Check out their stories:

Ryan’s Island Adventure

Thirteen-year-old Ryan loves warm weather, swimming and being at the beach. After being diagnosed with a gastrointestional stromal tumor, surgeries and treatment kept Ryan away from seeing his friends and playing his two favorite sports – basketball and baseball. Ryan daydreamed about leaving his worries behind and going on an island adventure. When he learned that his wish would be granted, more than anything, Ryan wanted to take a family vacation to Beaches Resort in Turks & Caicos!

From the moment he landed, Ryan couldn’t wait to explore the tropical island. He was greeted with the most spectacular views of palm trees and white sand beaches. Ryan and his family explored the villages that made up the resort – each themed after Italy, France, and of course, the Caribbean. His days were filled with waterslides, sun, relaxation, and a break from the everyday stress that had begun to define his daily life.

Being given the opportunity to travel was a perfect escape from doctor’s appointments and medical treatments and Ryan felt a new sense of hope upon his return home.

Emma Visits Hawaii

Eight-year-old Emma’s passion for the sea helped her through months of treatment for acute lymphoblastic leukemia, as she imagined beachside adventures outside of the hospital walls. Emma wished to go to “paradise” with a trip to Hawaii!

Upon arrival on the island, Emma headed straight to the azure water and warm sands. The adventurous girl spent her days swimming, snorkeling, surfing and sailing. Surfing was her favorite, and she “totally rocked” at it, standing up on the board on her first attempt! On land, Emma loved experiencing the color, tastes and spectacle of a traditional luau. The incredible scenery made the hospital feel like a distant memory.

Emma’s visit to Hawaii marked the beginning of a new chapter for her and her family. Together they celebrated the end of her treatment and now look forward to a bright future.

 

 

 

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PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. Health data includes information about a disease or condition – how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe 
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375


“Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Posted November 28th, 2016 by

Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. See what she has to say below…

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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Lung Cancer Awareness Month: An interview with member Clare

Posted November 23rd, 2016 by

November is Lung Cancer Awareness Month, and to share some insight into what it’s like to live with this condition, we talked to member Clare (Riverdale). When she was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Get to know Clare below, and see what she has to say about “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

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Patient Advocacy: An interview with artist and activist Regina Holliday

Posted November 22nd, 2016 by

Regina Holliday wears many hats. She’s an artist, activist, speaker and author, and she’s painted hundreds of patient stories on the backs of jackets in an ongoing art project called The Walking Gallery.

Through her art, Regina promotes better care, treatment and transparency in healthcare. She’s been an advocate of PatientsLikeMe for quite some time (two of her paintings hang in our office!), and shares our belief that patients and their providers should work together as a team.

Today, we’re sharing a recent interview from Regina Holliday’s Medical Advocacy Blog. Check out what she has to say about the role of a patient advocate, the importance of choice in healthcare and the impact art can have:

“It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.”

 

How would you define the role/responsibilities of a “patient” advocate?

The patient advocate can be defined in several ways.  Sometimes this is an official staff member in a facility.  They can operate as a patient navigator or customer service operative.  In the best scenario, their job is to help the patient understand the processes and options in care within the facility.  In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members.

Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection. In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own difficult medical decisions, and review and negotiate medical bills.

Often the patient advocate is a close friend or family member who is not paid for their service. This advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time.

Finally, there are patient advocates focused on policy.  I am often classified among this category, although I prefer the term patient activist.  A patient advocate focused on policy attends local, regional, state, and federal meetings to provide a patient perspective in policy decisions.

*(This is by no means meant to be an exhaustive definition of a patient advocate. Just how I define it in response to this question.  There are several other resources out there to learn more, like this one.)

** (Additional edits were made on 10-5-16 to clarify the responsibilities of patient advocates in relation to the AdvoConnection.)

You do a number of these sorts of speaking engagements and presentations around the country. Are there some unifying themes — clear trends — you see, common ideas that many people share about their worries or attitudes toward health care? Patient safety? Patient advocacy?

I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH legislation morph and change.  Patient access to data at stage one of Meaningful Use had budding teeth and at stage two it got poor fitting dentures.  I have watched the ACA become the law of the land, only to see constant steps to repeal it.

I watched the concept of patient engagement grow from a demand in small healthcare meetings, to a hashtag on twitter  (#patientsincluded), to trend of conferences inviting patient speakers.  I hoped that the next step was true partnership in decision-making and design.  Sadly, of late I have often heard that “patient engagement” was out of fashion.  We are now onto MIPS and MACRA and massive ACO’s.

I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see Value Based Care begin to role out, as it addressed so many concerns of these advocates.  I am saddened to hear how many attendees at conferences expound on their love for fee for service.   Or twist the intended purpose of reducing readmissions, by leaving patients in hallway for days to be “observed,” but not admitted after complications.

The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in healthcare.  There are also amazing individuals, often on Twitter, (check out #hcldr), that will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately.

Will patients ever be like consumers of other products? Outside of elective procedures or choosing a birthing place/option, how much real consumer choices do patients have in their health care? How would you like to see those avenues expanded or re-routed?

I hate the word “consumer” when applied to healthcare; it assumes we take and never give.  Partnership in care requires two-way communication.   Care is always about choice.  When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure.  When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care.  Which may include a hospice path, if that is their choice.

We have a choice right now.  The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that customer will decide which items to buy rather than the shopkeep.

Regina Holliday during a visit to PatientsLikeMe in September 2016

How would you like to see health care systems and hospitals–particularly public and teaching systems– involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting?

Patients, caregivers, and patient advocates need to be present in meetings throughout the facility.  For far too long we have been forced into the role of lobby designers.  We ask that you invite us to take part and provide appropriate recompense for our time.  Or schedule the meeting after the workday is done at the facility.  That would be fine.  Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be.

You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.

How would you describe your painting style and approach?

My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused.  As a few people have told me over the years,  “Your work is often sweet and disturbing at the same time.”

Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors, care providers?

As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.  It is a very nice feeling to be in the zone and at one with the cosmos.  But the creation of art could feel like a nail ramming through my hand, and I would still create.  I use art as a tool and the goal is to impact others.

It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.  To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.”

Are you alright? by Regina Holliday

Of all the art you’ve made–your Walking Gallery, the murals — can you choose one piece and describe it and explain why it’s a piece that you especially want to share?

My favorite piece is “Are you alright?”  In that painting, I captured my late husband Fred. He stares at me from that painting like he is still with me.  Still alive on pigment covered canvas.  Still urging me to help him, a patient.

And every day I do exactly that.

 

 

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Food for thought: What GERD means for digging in on Thanksgiving

Posted November 21st, 2016 by

It’s GERD Awareness Week — and it’s also Thanksgiving week. To a lot of folks, this means a holiday feast with all the trimmings: turkey, stuffing, mashed potatoes, pies and other rich foods. But for people living with gastroesophageal reflux disease — over 4,650 here at PatientsLikeMe — it might mean something different.

The most common symptom of GERD is heartburn, but others include difficulty swallowing, hoarseness, sensation of food sticking in the esophagus, chronic sore throat, wheezing or chronic cough.* And while food doesn’t cause GERD, it can aggravate these symptoms.

So what does this mean for eating on Thanksgiving? Here are a few tips from the International Foundation for Gastrointestinal Disorders (IFFGD):

  1. Eat dinner earlier
  2. Season lightly
  3. Pass on deep frying your turkey
  4. Eat slowly
  5. Drink more water (and less soda and alcohol)

If you or a loved one is living with GERD, what Thanksgiving tips and GERD-friendly recipes can you share? Hop in the forum and get a conversation going.

*http://www.aboutgerd.org/

 

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PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Posted November 17th, 2016 by

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs

CAMBRIDGE, MA., November 17, 2016PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.

The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications.

PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes.

Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and their severity on Walgreens Health Dashboard, a secure and private personalized health information offering.

“Whether you’re just starting a new medication or you’re researching alternatives, knowing what others have already experienced is invaluable,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology & Operations. “We’re excited that our members are helping more people know their options and what to expect, so that everyone can make more informed choices for their health.”

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


In her own words: Letitia shares about her new brain for Epilepsy Awareness Month

Posted November 16th, 2016 by

Have you met Letitia (Letitia81) from the epilepsy community? Four years ago, her research on PatientsLikeMe led her to the brain surgery that forever changed her life — she’s now seizure-free after three decades.

Things are much different now for Letitia, and she’s written all about her before and after in a recent article for WBUR (Boston’s NPR news). And as it’s National Epilepsy Awareness Month, we’re passing along her firsthand account of her new normal below. Check it out.

After 3 Decades of Seizures, Life with My New Brain

By Letitia Browne-James

I was 31 when I began to think with my new brain.

I’d been diagnosed with epilepsy when I was 11 and struggled with forgetfulness, interruptions in my thoughts and a lack of focus my entire life. I didn’t know that these were classic signs of brain fog, a symptom of epilepsy. I knew that my classmates seemed to grasp math and history more quickly than I did. Sometimes, I felt like I couldn’t understand things completely, no matter how many times I read or listened to my teachers’ explanations. It was a terrible feeling.

I had seizures, too, and they worsened as I grew older, appearing more frequently, always without warning. I had them at church, in class, at work, parties, weddings and while walking around the lake in my neighborhood. I often injured myself during these episodes. About four years ago, my doctor suggested that I would be an excellent candidate for brain surgery to treat my epilepsy. In August 2012, a surgeon removed a piece of my left temporal lobe the size of a sugar cube.

I didn’t know I had brain fog until it disappeared. Then I began to discover what I could do.

I was an infant when I had my first seizure, according to my parents. I had been hospitalized for asthma. After that medical crisis, life was normal until my parents noticed that sometimes I stared into space, didn’t respond verbally, and occasionally drooled. This behavior became more frequent when I was about 10. At 11, I was diagnosed with grand mal seizures and I started taking epilepsy medicine. It did not control the seizures, even when my neurologists increased the dosage and switched me to other anti-epileptic drugs such as Tegretol and phenobarbital — I had allergic reactions to both — and Dilantin.

In college, I still struggled academically and physically because of the seizures. I fell and hurt myself, bit my tongue and other parts of my mouth. I have permanent marks from injuries, including a chipped front tooth from a fall. The aftereffects lasted for days or weeks. I sometimes needed to sleep for a day and a half to recuperate. These side effects, combined with the rigor of college courses, proved challenging. I was also hospitalized several times, missed many days of classes, and was not always fully alert in school. But I have always been a fighter who succeeds in spite of obstacles. My academic performance improved during the last two years of college and my professors introduced me to scholarly research. Earning a doctorate became my long-term goal. I graduated with a bachelor’s of science in psychology with a B average.

Two years after college, I took the Graduate Record Examination because I planned to complete a master’s degree in counseling. I struggled mentally and physically while preparing for — and taking — the test, and earned low GRE scores. Still, I received contingency acceptance into a top graduate program. I had to pass my first-semester classes to end my contingency status. I not only passed, but had a 4.0 GPA by the end of that semester. I was ecstatic. But the challenges of living with epilepsy continued throughout graduate school. The seizures were becoming more violent and frequent, even though I took my medication regularly. I was desperate to control them.

Throughout my childhood, my MRI and electroencephalogram, or EEG, exams indicated that the seizures occurred in the left temporal lobe of my brain. But in my early 20s, they stopped appearing on those tests. I later learned that I had developed refractory epilepsy, a type of epilepsy that is particularly hard to diagnose and treat. Unless the patient has a seizure during an exam, test results and brain anatomy appear normal. In my professional training, I learned a lot about somatoform disorders: physical symptoms that mimic illnesses such as seizures, heart attacks, strokes but do not have physical explanations. I wondered if my seizures were psychosomatic.

 

“Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known.”

 

I found a compassionate psychiatrist; she was very personable, patient-centered and a Christian like me. After a few visits, she said, “I cannot explain what is happening neurologically, but I can tell you that those seizures are not psychosomatic.” She noticed that my seizures were causing me great anxiety and prescribed Xanax. She was right. I constantly feared having a seizure. Everyone around me was supportive, but I felt embarrassed, upset and anxious. The Xanax lessened my anxiety, and I am grateful to my former psychiatrist for her help.

I encouraged my counseling clients to become informed patients and play an active role in health care for themselves and their loved ones. I did the same. I researched my condition and found a website called PatientsLikeMe. I read the stories of other people with epilepsy. I learned about other tests and treatments — including brain surgery — that helped patients with epilepsy find relief or cure from seizures. I learned about “patient-centeredness” — working with health care professionals who truly value their patients’ input about their care and help them choose the treatment options that are right for them.

On PatientsLikeMe, I learned about both the 72-hour EEG and epileptologists, neurologists who specialize in epilepsy that is hard to diagnose and treat. None of my neurologists had mentioned this specialized doctor. I made an appointment immediately to see an epileptologist, and that was when my life started to change.

My new doctor ordered a five-day inpatient EEG on the epilepsy monitoring unit in a local hospital, where he and his team induced seizures while a machine recorded the activity in my brain to see precisely where the seizures originated. The epileptologist and his team determined that I could benefit from brain surgery. At the hospital where I would have the operation, I underwent a series of pre-surgical tests and passed them all. I began to count down to my surgery date. I was so excited by the prospect of ending my seizures that my pastor later said, “Letitia was acting like she was going to Disney World or something.”

Research has shown that epilepsy surgery is relatively safe. Most patients no longer have seizures afterwards. Pre-op testing can predict how patients will fare. Temporal resections — where the piece of the brain’s temporal lobe that is causing the seizures is removed — are the most common type of epilepsy surgeries.

I had a left temporal lobectomy on Aug. 16, 2012. My surgeon removed the small part of my brain through a tiny incision. My operation was very successful. I haven’t had a seizure since, and my doctors don’t expect me to have another seizure ever again. After my surgery, I had a severe headache for about a month as my brain and head healed. I felt like I had been hit in the head with a hammer. I had to spend most of that time in bed because of the pain and sleepiness from the pain meds.

I am still getting to know myself post-epilepsy. Not only is my brain free from the misfiring electricity that caused seizures, but my mind and body are free from the long-term effects of anti-epileptic medications.

Since my surgery, I’ve started experiencing mental, spiritual, emotional and physical clarity unlike any I’d ever known. That feeling became more apparent when I went back to school two years ago to pursue my doctorate in counselor education and supervision. For the first time in my academic life, I can learn and study without the fuzziness of brain fog and the challenges of epilepsy and medications. I can read and understand material much faster and with greater depth than before. I am maintaining a 3.9 GPA in my doctoral program and expect to finish in 2018.

I share my story openly and frequently, not just with epilepsy patients and their loved ones, but with all patients. I have learned that some of the physical, emotional and mental agony that I faced with seizures occurs across diseases. In particular, many patients suffer from brain fog and the adverse effects of medicine. Unfortunately, some, like me, may not know if what they are experiencing is specific to the disease — or what their lives could be like without illness or medication.

I told my story to the family of a young girl who also suffered from epilepsy. She and her family eventually decided to seek brain surgery. (She required three operations.) She’s now a seizure-free teenager. Mostly importantly, she is living without seizures at a much younger age than I did.

When I was a child, my parents didn’t let me ride my bike for a few weeks after I had a seizure. As an adult, I didn’t ride much. I had to give up driving when my seizures became more frequent. Now I drive again and I bike regularly for fun and exercise. I’m very grateful for my new brain.

 

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Barry shares his story for National Diabetes Month

Posted November 15th, 2016 by

November is National Diabetes Month, and this year, we caught up with Barry (bjf2000): history lover, grandfather and member of the diabetes community. Below, see what Barry says about his journey to diagnosis (“a flipping mess”), what it’s like to manage multiple conditions and becoming his own advocate.

Tell us a little about yourself. What are your hobbies and passions?

Right now I like genealogy and the study of my family history. History is people. I wish someone had told that to me back in high school! One branch of my family came over on the Mayflower, and I only need to find two more marriage certificates to prove my line down to the present.

My other passion is my grandchildren. I have six. One is an adult, one will be an adult in September, and the rest are 11, 8, 5, and 4. Four boys and two girls. Some are mine biologically, others by marriage. I, personally, do not differentiate. I don’t care how they got here, but they are mine now!

What was your diagnosis journey like?

My diagnosis was a flipping mess. As a teen, I was aware of diabetes, as my mother was diabetic, and taking insulin. I learned to administer shots just in case, and learned what her diet should be. Her doctor took us aside and explained that diabetes was hereditary, but if we followed our mother’s diet and weight management plan, we might be able to avoid or minimize the possibilities.

I took this man seriously. I switched to diet pop, and quit the cookies and candies. I cut down on the carbs, and ate lots of proteins.

In college, I started having these funny “spells” where I would get dizzy, shaky, and sweaty for no obvious reason. And it would be accompanied by an odd sort of intense hunger. So bad that I would grab the first edible thing in the refrigerator and gobble it. Raw hot dogs, slices of cheese, fruit, vegetables, even raw potatoes.

Eventually, I was ordered a glucose tolerance test. My sugar reading went way up into the 400s somewhere over the first two hours. They hung in there a bit more then started coming down. Fast. At six hours they stopped the test because I was not in good shape at all. I was having the worst episode I had ever had, and was not thinking clearly. I was told that my reading was under 40 and still dropping.

This was weird, but nobody really understood what it meant. They told me again I needed to gain weight. I tried but failed to rise above 130. They bumped calories, I kept up, but did not gain weight. At 5,000 calories a day, I gave up. I could not eat that much and be comfortable, but I did gain two pounds that month.

Eventually I hit 145 pounds. It was sort of true that extra weight helped hold off the episodes. But, oddly, my weight did not stop. My doctor said it was because I was older now and my metabolism probably changed. Just watch what you eat, he said. OK, I cut back some. The pounds were coming on faster, now. 155, 170, 195! Yikes! I counted every calorie, and charted every pound.  Instead of listening, my doctor accused me of lying about my food intake. I fired him.

My new doctor made an effort to listen to this new 215-pound patient. He did some tests, and my blood sugars were normal, but just a hair below “pre-diabetes.” His theory was that perhaps I was in the early stages. We watched my weight and sugar readings rise. At 265 pounds he was ready to declare me a diabetic. I thought this meant I was not making any insulin. He disagreed, and ran another test. My body had 300% of a normal person’s insulin running around doing nothing.

Numerous medications later, I was in a stable state, and I began a rather intense weight-loss program. About 800 calories a day. Alas, I had to stop because the blasted diabetes took an unexpected turn.  We tried new medicines, one with disastrous results.  My legs suddenly started to swell up to the point they filled up my pants, and the skin started to split.  I still suffer from this issue, although surgery has helped greatly.

I really did not want to start insulin, as it reminded me too much of my Mother. I started at 10 units a day, and quickly moved up. I got to the point that I needed to take all 300 units per day.

Now, I take one shot in the morning with my other medications.  I eat a little something because the pills upset my stomach. I eat dinner at home, trying once again to lose weight along with my wife. I have a snack before bed, take my pills, and my evening shot.

I am experimenting with different snacks to see how they affect the readings in the morning. If it is sort of sweet, it seems to work better than just plain carbs like crackers or bread.  Fruit does not hold the nausea at bay, but I have been trying to combine that with a little bread. Surprisingly cookies seem to work pretty good.

How has life changed since getting diagnosed?

Well, I am older.  I do not know if I can attribute my current issues to diabetes directly, or just the ravages of aging. I have arthritis, but it is weird. One toe, one finger, two knees, one hip are really giving me a time, but I have three more fingers and a toe gearing up.  I have been told that non-symmetrical arthritis may be associated with diabetes type 2.  “Syndrome X,” I believe is the name mentioned. Could be. I read up on that a bit, but no doctors are willing to make that a diagnosis.

Along with diabetes type 2, you’re also living with hypertension. How has it been managing the two at the same time?

I do not even believe I have this. I was tested for three months before being diagnosed, and my blood pressure was fine. Up near the high part of normal, but it was fine. The day I was diagnosed, suddenly I was told I had hypertension, but the actual numbers never changed.  They put me on medicine, which promptly made me sick. After several tries, we have one that only makes me sleepy. If I sit too long, I am gone. Riding in the car, I am gone.  I used to love to drive, but now, I can’t go for much more than an hour and I am so sleepy I have to stop.

What’s one thing you think people should know about diabetes type 2?

I do not believe it is a “Lifestyle Disease.” I do not know what triggered mine, but my lifestyle was pretty good except for eating cheeseburgers several times a week for lunch. That name makes it sound like I did this to myself, and I am just too lazy to cure it. Believe me, that is not the case!

How has your experience been so far on PatientsLikeMe? What keeps you coming back to the site?

I find myself answering more questions than asking them, but when I do have a question, I get lots of interesting things to think about, read up on or grill my doctors with.

 

 

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375