17 posts tagged “Advisors”

Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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Getting to know our Team of Advisors – Kitty

Posted June 18th, 2015 by

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others.

About Kitty (aka jackdzone):
Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding out what patients’ unmet needs are.

Kitty on patient centeredness:
“To me, it means that it’s all about the patient from start to finish. In the beginning, it’s talking with patients, conducting patient surveys and reading any written material that would be helpful in order to find out what patients are most wanting and needing and not getting. In healthcare, this would translate to a doctor engaging with a patient in a way that is especially helpful for the patient. This may require asking a question a certain way in order for the patient to answer truthfully and to feel that their doctor really cares about them as a person. (I was fortunate enough to have had one primary doctor like this for many years and it makes a huge difference!) It puts the focus on that particular patient at that moment and requires empathy and understanding (and not just going through the motions) in determining what is best for that patient.

In the area of research, the same is true. Research of this kind is done to improve the client’s physical and/or mental life in some way. Any research should be done with the patient’s well being at the forefront. Questions should be asked in a way that will lead the client to be very open about their experiences. The client should be fully informed regarding any research in which they participate and be asked at the end if there is anything that has not been covered that they have questions about. They should be informed of the results of the research afterwards and perhaps be allowed to give their thoughts about the findings.”

Kitty on being part of the Team of Advisors:
“A year ago, when I read that PatientsLikeMe was putting together a Team of Advisors, I didn’t hesitate to apply. I wanted to be part of something that had helped me a great deal during a part of my life when I was the most depressed and struggling. When I was eventually chosen to be on the team, I was and have continued to be very honored. I feel such a strong affiliation with PatientsLikeMe and want to be able to help others in anyway that I can. During this past year, I’ve been able to participate in helping to compose a patients’ rights handbook and be interviewed by a researcher regarding how patients view clinical trials. Being on the Team of Advisors has given me the chance to become an advocate for myself and others. It is something that means a lot to me and something that I enjoy doing–and I think it’s something I will continue to do in whatever capacity I can throughout my life.”

Kitty on helping others:
“From the very first day that I joined PatientsLikeMe several years ago, the website has meant a great deal to me. Most of the people in my life did not really understand what I was going through. At times, they thought I really could have done more, but that I was just being lazy. When you are suffering from MDD, this viewpoint from others only increases your depression. I didn’t know where to turn. What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. As I began posting on the site about what I was going through and how depressed I was feeling, I felt somewhat better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.

After awhile, I made it a point to also reach out to encourage others. I noticed that some people seemed to be very depressed on a daily basis with very little hope and I felt I had to reach out to them in some way. I began responding to their posts. A lot of times I just said that I was sorry that they were feeling bad, as I didn’t know what else to say. I hoped that just this much would encourage them. I didn’t want to be overly upbeat if that wasn’t how they seemed to be feeling, because I felt this was a disservice to them. I felt that the more I could just be there for them right where they were and with how they were feeling the more I could be of help.”

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Getting to know our Team of Advisors – Letitia

Posted June 12th, 2015 by

You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work.

About Letitia (aka Letitia81):
Letitia is a Licensed Mental Health Counselor in Florida and a National Certified Counselor specializing in mental health and marriage and family issues, who was diagnosed with epilepsy at a young age. Letitia consulted with doctors across different disciplines both nationally and internationally and did not find an effective treatment until she found out about epileptologists on PatientsLikeMe. Through consultations, she realized she was a good candidate for brain surgery and she underwent left temporal lobectomy August 16, 2012 and has been seizure free ever since. She successfully weaned herself off of Keppra this month under her doctor’s supervision.

Letitia is very passionate about giving back to others, and recently met a young epileptic girl and inspired her to undergo the same life changing surgery, and so far she’s met with great results. In addition to helping the young girl and her family, people contact her regularly from all over to consult about their or a loved one’s seizure condition and she’s always willing and delighted to help. Letitia is passionate about research and believes in the power of research to positively change the quality of life (mind, body and spirit), for those living with epilepsy and other chronic conditions.

Letitia on patient centeredness:
“It means that the treatment is individualized based on the patient’s (or research participant’s) unique condition/situation as well as their opinions regarding their health.”

Letitia on the Team of Advisors:
“Being a part of the team of advisors has been an invaluable experience! It has allowed me to work with other “rock star” patient advisors and PatientsLikeMe staff that are just as passionate as I am about changing health care, including research to be more patient-centered for all patients. This experience has also given me exposure that I did not imagine before to share my story, encourage, and inspire patients and caregivers. Additionally, I have been able to network with professionals from many disciplines about the value of the patients’ voice! I have heard from many patients and caregivers from different parts of the country and the world! They reached out to me with questions, for guidance, to thank me for sharing my story, and to share their stories with me. I am so humbled that they felt comfortable sharing their stories with me and looked to me as an “expert” for advice. I guess I should not be too surprised by this since I am not only a patient that can relate to their experience, but I am also a professional counselor. I have been blessed with the gift of showing empathy and compassion to others in my career. Finally, this experience, particularly working on the best practice guide for researchers fits nicely into my current professional endeavor of pursuing a Ph.D. in counselor education, with an emphasis on counseling and social change. Social change involves advocacy and creating innovative ways to improve humanity!”

Letitia on advocacy:
“I am very passionate about advocacy work! Advocacy has been a huge focal point in my role as a professional counselor. I am currently a clinical manager for a large mental health and substance abuse agency and I teach and mentor my staff about the importance of advocacy work. Advocacy is one of the many reasons I stay involved as a patient on the PatientsLikeMe website. Additionally, I have been able to partner with other organizations such as Partnership to Improve Patient Care (PIPC) and the US News & World Report to share my story with diverse audiences. Ultimately, these experiences have allowed me to help other patients and caregivers see the value of advocacy in patient-centered health care, and I am so grateful to be a part of this powerful movement!”

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Getting to know our Team of Advisors – Charles

Posted June 8th, 2015 by

We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors.

About Charles (aka CharlesD):
Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS.

Charles on patient centeredness:
With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: “Information is organized according to the patient (or the user’s) view of the world. Questions that the patient most needs answered are listed front and center. The design is based on addressing the needs of the patients (users). Info is organized cleanly and logically with possible visual impairments, color perception problems, and cognitive issues of patients (users) always in mind. Research should focus on areas that will make the most difference to the patients. Ask them. Survey them. Get to know the ‘voice of the patient’ just like we look to capture the ‘voice of the customer’ in user-centric design.”

Charles’ military background:
“I joined the US Army in 1986. I did basic training and AIT at Fort Jackson, SC. After that I was off to 3 weeks of jump school at Fort Benning, GA. Then I went to the Ranger Indoctrination Program (RIP) again at Benning. I was then assigned to HHC 75th Ranger Regiment.

I spent 3 years with the 75th training for a lot of pretty cool missions. We trained a lot for airfield seizures. Basically parachute onto a foreign airport or airfield, wipe out all resistance, take the tower, and make way for our big planes to land shortly after. We had early generation night vision goggles (NVGs). I drove a Hummer full of Rangers off the back tail ramp of a pitch black C-130 that was still rolling after touchdown while wearing NVGs. They were no help at all inside the plane since they only amplify existing light. If you are pitch black you are still blind. It is a wonder that I did not kill anyone or damage the C-130 that night.

So I joined up right after Grenada and I got out right before Panama. I never saw any combat. These days I volunteer my time with, and financially support, a veterans group called gallantfew (www.gallantfew.org), started by retired Ranger Major Karl Monger.”

Charles on being part of the Team of Advisors:
“Being on the PatientsLikeMe Team of Advisors has been a wonderful privilege and an excellent opportunity for me. As a person with a brain disease, it is not always comfortable talking with others about my illness. When the Team of Advisors first met up together in Boston, I knew that I had found my second family. I was together in a room where every single person there was struggling with one or more diseases, many of which can be fatal. In fact, one of our team members, Brian, died after serving for only a few months. It was such a warm and welcoming environment. All of us were able to speak openly with each other and with PatientsLikeMe staff and we were heard. Each story, no matter how painful, resonated with the whole group.

All of us in the first PatientsLikeMe Team of Advisors shared many of the same goals. We are an extremely diverse group, but we all bonded immediately. What we want is to help conquer the diseases that have caused problems in all of our lives. We want to improve the relationship between researchers and the patient community. We want to help health care providers to better understand the patient perspective. And we want to make the world a better place for the next generation and for all generations to come. PatientsLikeMe embraces those goals and we embrace PatientsLikeMe. Together we are taking on all diseases.”

Charles on healthcare for veterans:
“As a veteran, health care issues are very important to me. I have seen so many veterans return home with wounds to body and mind. Many are shattered and have no idea what to do with themselves next. Some turn to drugs and alcohol, others to fast motorcycles or weapons. Suicide is rampant among newly returned veterans. The VA is woefully underfunded to take on the mission of supporting wounded and traumatized veterans. In the halls of Congress, the VA is seen as a liability, an unfunded mandate. Many veterans are denied the coverage they so desperately need. Many active duty service members are forced out with other than honorable discharges for suffering from PTSD or TBI. This limits the liability of the VA to support the veteran after separation. A good friend of mine who died recently put it this way. He said to me, ‘The military operates on the beer can theory of human resources. Picture a couple of good old boys out for a good time. They go down to the local liquor store and grab a nice cold six pack of beer. They go down to the lake, they each pop the top and they each start chugging a wonderful ice-cold beer. When they get through the first beer, they crush the can and throw it away. They grab another and another until the beers are all gone.’

I didn’t understand how this related to the military. He explained, ‘The brand new ice-cold beer is like a new recruit. The military sucks everything they can out of the person until all that is left is the empty shell. Then they toss that out and go grab another one just like the last one.’

We don’t deserve a health care system that treats returning veterans as empty shells. We can do better, but the current system is clear reflection of the value system at play in Congress. Funding for weapons programs are highly protected. Funding for the people who wielded those weapons systems is not. My answer may seem a bit cynical, but that is how I see the current state of affairs.”

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Getting to know our Team of Advisors – Steve

Posted May 29th, 2015 by

A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being a part of the Team of Advisors means to him.

About Steve (aka rezidew):
Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly conduct relevant research.”

Steve’s view of patient centeredness:
“The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”

Steve on being part of the Team of Advisors:
“Being a member of the Team of Advisors has helped me understand a wide array of perspectives on patient-centered research based on my interaction with fellow patients who have various health problems and who have various levels of knowledge about research. I am impressed with the consensual consolidation that has emerged from the Team’s dialogue about research.”

Steve’s experience with bibrachial ALS and research on ALS:
“A diagnosis of ALS can be associated with several different configurations of symptoms. Some PALS (Patients with ALS) begin with problems in their feet and legs, some begin with difficulty talking and/or swallowing, and some, like me, begin with weakness in their hands and arms. Also, some PALS start relatively young and have other PALS in their family. And, some PALS have dementia. We all lose our ability to breathe eventually and our array of symptoms broadens, but our initial experience can be very different. I am surprised and disappointed that the medical community has not done more to identify our subtypes and to track our progression within our subtype.

Developing a PALS taxonomy would help doctors provide support to PALS that is most relevant to our needs. It would also help us share our experience with fellow patients and learn from each other. An ALS taxonomy would also be extremely relevant for research on treatments. Ongoing research on ALS using rodents with SOD1 mutations may yield an effective treatment someday, but for now PALS would feel more supportive of this research if it used models that reflect the different taxonomies of ALS. We would feel even more supportive if more research allowed us to participate in studies that focus directly on medicines that could help our ongoing progressive terminal illness.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for ALS.


Getting to know our Team of Advisors – Amy

Posted May 13th, 2015 by

We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with Fabry.

About Amy (aka meridiansb):
Amy is currently on the Patient Advisory Board for Amicus Therapeutics where she serves as a patient voice for researchers as they work to develop a new drug for Fabry Disease. Amy is a great champion to have in your corner, with a self-reported ‘wicked sense of humor’, and passion for connecting others to the right resources and information. She has experience advocating for others as a medical social worker, and believes in the importance of getting to know a patient population, writing materials that they can relate to, and understanding how managing their condition fits into their life as a whole. Her tip for researchers and healthcare professionals: “Remember, not everyone fits into neat categories. Those that fall outside of what’s typical can be an invaluable resource when researching a particular condition.”

Amy on patient centeredness:
“Patient-centeredness means that above all else, you have an awareness of the patient as a unique human being, because diseases don’t exist on their own, they happen to people. It means not always doing what is easiest for the doctor or researcher, but what is appropriate for the individual. It means being open-minded and adaptable, not everyone fits in a neat little box. It means not treating people like they are stupid just because they don’t have a medical degree. People know their own bodies, and live with their condition day in and day out and if doctors and researchers don’t listen they can miss crucial information that can help many. These days people have access to a lot of information, and they want to be treated like partners in their care not problems to be solved seen only through the filter of illness, and certainly not like a nuisance because they have an opinion about things.”

Amy on the Team of Advisors:
“Being a member of the Team of Advisors at PLM has been an incredible experience. Having had to quit school and work due to illness, I felt at times that everything I had achieved was for nothing and that I had nothing to offer to this world, which was beyond discouraging. Being a part of the Team of Advisors has given me a meaningful way to use my knowledge and experience to help shape the way physicians and researchers interact with patients. The first time I sat in a room with the team and the wonderful people at PLM I felt a sense of hopefulness that it was all happening for a reason. It taught me that even when your path is diverted by something out of your control, you can find a new path; there is good to be found in every circumstance even when you can’t see it right away. I feel lucky to have served on the Team of Advisors with such a diverse and passionate group of people.”

Amy on having a rare disease:
“Having any illness can be confusing and overwhelming, but when 95% of the doctors you see haven’t even heard of your disease, it can be exasperating and daunting. Having a rare genetic disease, Fabry, has presented me with an even greater need to advocate for myself and others with my same condition. I’m lucky enough to have a background working in hospitals as a medical social worker, so I am no stranger to advocacy and I have no problem speaking up; but this isn’t the case for everyone. Upon my mom’s diagnosis, and then my own, I quickly jumped onto message boards and support groups for Fabry, only to find there are many more questions than answers. I am lucky to have access to a geneticist that is familiar with Fabry, but most people don’t. Because our disease is so rare, many people are hundreds of miles from anyone else with Fabry. In person support groups aren’t really an option, so the internet and learning from each other on social media is crucial. I spend a lot of my time gathering questions from other people with Fabry and working them into my appointments, then reporting back to the message boards. Others do the same, and together we find our way to new tools to manage our lives with Fabry, new things to ask our doctor’s about, and new resources to call upon in trying to figure out this disease. In addition, I try to support others in being assertive with their doctors. I think we have been deeply conditioned in our society to respect authority and education, which is not inherently bad, but it can create an obstacle to honest communication with our health care professionals. It can be really intimidating! You try telling a person with 8-12 years of medical education and years of practice experience that you would like to teach them about a medical condition they don’t already know about! Some egos are better equipped than others to handle the learning curve required in having me as a patient. I ask a lot of questions and I expect good information in return. I always come from a respectful place, as I don’t expect every physician to know about Fabry, but I expect them to be open to learning about it. Some are more than willing and some aren’t and I’ve had to “break up” with my fair share of doctors who weren’t willing. But really, if they don’t care to continue growing as a provider, then I don’t really want them as my doctor anyway. So really, you have nothing to lose by setting high standards for your providers. But you have a lot to lose by remaining in the care of a doctor that wants to treat you like everyone else. You are not just like everyone else! You can miss out on valuable information that can seriously affect your care. So speak up, be respectful, but be assertive. And if you don’t feel that your needs are being met, cut your losses and find someone that does. You are the only one that can make those decisions for yourself! And if you need some moral support, just message me!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for Fabry and rare diseases.


A bold choice to fight epilepsy

Posted May 6th, 2015 by

As originally seen on the Tampa General Hospital News Center website

It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old.

“My parents said ‘no way,’” Browne-James said. “It was a very scary thought.”

They tried medications, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life.

Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free.

For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis.

Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it.

“Surgery is the most dramatic thing you can do to treat epilepsy,” said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at Tampa General and University of South Florida. “But these misconceptions exist. We see patients all the time who say, “Oh, my neurologist said, ‘Don’t do that. That’s a last resort before you die.’ “

For many patients, the risk of uncontrolled seizures is higher than surgery itself, Benbadis said. Two recent studies found most patients were seizure-free afterwards.

“If things aren’t working, there is a next step,” said Benbadis, also a professor of neurology at the USF Health Morsani College of Medicine. “Get to an epilepsy center, preferably Level IV, and see what’s causing your seizures and what your treatment options are.”

Patients who visit such a center may even discover they don’t have epilepsy.  Up to one-third of them are misdiagnosed.

***

Browne-James, who lives in Orlando, had her first seizure when she was six months old – and then not again until she was 10. She was diagnosed with epilepsy, an electrical disturbance in the brain that causes seizures. She tried one medication, then another.

But at least once a month, she would have a seizure.

She chafed against the limits that came with epilepsy. She wasn’t allowed to go swimming. Or play too far from home.

She feared having a seizure in school or in church, while she was acting or dancing on stage, or, as she got older, on a date. When she met her future husband, Jonah James, Jr., through mutual friends, she told him about the disease right away.

She worried about her wedding day.

“I prayed really hard, just asking God to allow me to let me make it through that day without having a seizure,” she said.

Her seizures gradually got worse, occurring at least once a week. Now a counselor, she worried about having a seizure in front of a client.

Browne-James wasn’t able to drive. She lost a tooth. She cut her knee so badly that it required stitches and left a sprawling scar. She lost count of the cuts and bruises and hospital visits, all caused by seizures she couldn’t remember.

She tried more medications, and grew increasingly frustrated. About three years ago, Browne-James joined a website that has an epilepsy forum and began to talk with other patients.

The website, called PatientsLikeMe, became her lifeline. It prompted her to find an Orlando neurologist who specializes in epilepsy, called an epileptologist. She learned about brain surgery. Her new doctor gave her the names of three hospitals in Florida where the surgery is performed.

When she called the first one, the doctor there said the hospital could perform her surgery. But he told her she would be better off with a center that performs the surgery more often. She said he recommended Dr. Fernando Vale, surgical director of Tampa General’s epilepsy program and vice chair of USF Health’s Department of Neurosurgery and Brain Repair. Tampa General is the busiest epilepsy surgery center in Florida.

***

Browne-James underwent an extensive evaluation to see whether surgery would help her.  Doctors like Benbadis can identify what part of the brain the seizures come from and evaluate whether it controls any essential cognitive functions.  They can also see which side of the brain is dominant.

“We need to educate patients and physicians more,” said Dr. Vale. “It’s still delicate surgery, don’t get me wrong, but people talk about surgery as scary, how it will disfigure them. And there are misconceptions among neurologists. We are trying to reduce these fears and reassure patients it’s a safe operation.”

The extensive neurological testing and use of two-inch long “keyhole” incisions can help reduce those fears, he said. As the day of the surgery grew closer, Browne-James wasn’t scared.

“Everyone thought I was crazy because I was very excited and counting down the days to brain surgery,” she said.

Dr. Vale removed a tiny piece of Browne-James’ brain, about the size of a sugar cube.  Browne-James marveled at how small the scar was.

She hasn’t had a seizure since. And her cognitive abilities are fine; she’s now working on  her PhD.

Since her surgery, Browne-James has become an outspoken patient advocate. She’s made a video for PatientsLikeMe and frequently speaks with patients and medical researchers about the need for patients to be informed about their care.

One of those patients was an 11-year-old girl.  The girl went on to have surgery and has been seizure-free since.

“She doesn’t have to grow up like I did,” Browne-James said. “Living with epilepsy and planning her life around it.”

For more information about the Comprehensive Epilepsy Program at Tampa General Hospital, contact vkelley@tgh.org or call (813) 844-4675.

Story by Lisa Greene, video and photos by Daniel Wallace, Tampa General News, Friday, April 17, 2015.

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Getting to know our Team of Advisors – Deb

Posted March 27th, 2015 by

You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana.

This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her. 

About Deb (aka ruby1357):
Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it.

Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms.

Deb on patient centeredness:
“I feel fortunate that, because of my work, I have been able to see clinical research from the perspective of both the patient and the researcher. I have worked with and for many organizations, researchers, and physicians over the course of my career, and I have found that, ironically, the patients themselves are often invisible in the research process. If patients are thought of as “cases” rather than as real people, and if patients don’t understand what is being done and why, then the research effort has lost what should be its central purpose.

The story of how I came to be diagnosed with MS illustrates some important points that I feel are related to patient centeredness and the work of PatientsLikeMe’s Team of Advisors.

On opening day of show season in 2009, I found for some reason that I couldn’t ride very well. Everything was off, and my body felt very strange. Embarrassingly, that day I received the lowest scores of my riding career! Days later, I found myself in the office of a neurologist, who off-handedly ran down a laundry list of differential diagnoses, ranging from a pinched nerve or Lyme disease (the latter is common among horse people) to Parkinson’s or multiple sclerosis. After weeks of anxiety and a multitude of tests, the same doctor casually informed me over the phone that “it looks like you have MS.”

At age 52, I couldn’t believe my ears, especially since my ex-husband had been diagnosed with MS many years before, very early in the course of our marriage. Back then, there wasn’t an MRI machine around every corner. It took 5 years after his first attack for him to be diagnosed. At that time, I was working for a major medical specialty organization, so I went to the library (no one had computers yet) and found everything I could about MS. Then we both started reading. At a time when the official slogan of the MS Society was “MS: The Crippler of Young Adults,” we learned that having MS didn’t mean you would necessarily end up in a wheelchair. The information we gathered reassured us. He went on to lead a totally normal life during the 10 years of our marriage.

I see these two incidents as related in very important ways. Having accurate information about MS kept my ex-husband and me from fear and despair. And the casual manner of the neurologist who gave me the MS diagnosis served as a perfect example of how NOT to interact with patients. Both incidents relate to how important it is for both researchers (who publish their results, which eventually may make it into patient information materials) and clinicians (who should take into account how it feels to be on the other end of the conversation) to keep the “end user”―the patient―at the forefront of everything they do.”

Deb on being part of the Team of Advisors:
“Being a part of the ToA has been a profoundly rewarding experience. I have made friends that I know I will keep once our terms are over. Like my colleagues on the ToA, I am deeply grateful to have the opportunity to be heard, without condescension, as a person experiencing a disease and its effects, and to have an opportunity to have a say in how research is conducted.

PatientsLikeMe has as its mission nothing less than changing how research is conducted, and I am excited and honored to be even a small part of that. There is a long-standing divide between the researchers who conduct clinical trials and the practitioners who provide health care to patients. Too often, patients are lost in the middle. The research/clinical divide has long needed a third party to bridge the gap. That third party is the patients themselves. By starting at this common ground—the patients whose lives are affected by both research and clinical practice—PatientsLikeMe is making important strides in bringing together these traditionally divided camps for a unified purpose: to better the health and quality of life of real people.”

Deb on MS research:
“Like my fellow Advisors and PatientsLikeMe itself, I believe that much can be learned from patients’ experiences, and this information should be used to design research studies. My own experience serves as an example of this.

In the weeks and months after my initial diagnosis, I found that movement was vitally important. MS is, after all, a movement disorder. My fellow horsewomen rallied to my side, lending me their quiet mounts to ride until my symptoms abated and I could safely ride my own high-spirited (to put it politely!) mare again. Those women―and the horses themselves―kept me moving.

When my current neurologist first met me, she told me that, having looked at my MRIs before our visit, she was amazed at how well I was doing. Although I don’t have scientific evidence for it, my belief is that my riding has kept the disease from progressing further than it has.

This is an example of how patients’ experiences can inform research. To date there are maybe a dozen studies on the effects of sustained physical exercise on MS disease progression. There need to be more clinical trials in this area, as well as in other chronic conditions, that are based on patients’ actual experiences. Those experiences―though anecdotal―are a treasure trove of possible study questions for clinical research.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Getting to know our Team of Advisors – Karla

Posted February 9th, 2015 by

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community.

About Karla (aka kam-turtle)
Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂

After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there to be better understanding that fibromyalgia is not a ‘one-size-fits-all’ condition.

Karla’s view of patient-centeredness
She believes patient-centered healthcare involves open communication between healthcare providers and the patient: “it should be an active and ongoing process to evolve the patient’s care toward results to create a more productive and comfortable lifestyle. It is a two-way communication stream based on mutual respect.”

Karla on being part of the Team of Advisors
Being a part of the PatientsLikeMe Team of Advisors is very humbling but also refreshing to my soul. At times when my illness is at its worst, I have always hoped my affliction could at least somehow benefit someone else, somewhere, even in the future. That is actually happening with the opportunity to be on the Team of Advisors. Like me, each team member is willing to share freely and openly in hopes of making the future better for others. It is so humbling to represent patients from so many walks of life and bring hope for a brighter tomorrow. The work PatientsLikeMe and the advisors have been doing can truly change the way health care functions.

Karla’s experience seeking care for fibro in a rural community
A decade ago, fibromyalgia was a foreign term in my rural community, even to me. Doctors dismissed me as stressed, depressed and overweight. Employers openly joked that people with chronic fatigue syndrome, bipolar and other hidden illnesses were lazy. One doctor said I had a ‘bucket condition’ or unknown problem. After two hospital stays, XRAYS, MRIs, CAT scans and three or four doctors later, I confided in a nurse practitioner who knew me. She knew me before I had spiraled down into a life of pain and she knew I was not faking. She suggested a condition called fibromyalgia and advised seeing a rheumatologist in a regional area. There I received the diagnosis of fibromyalgia. I was devastated and utterly embarrassed. I didn’t want to suffer the ridicule from the uninformed public. When I was too sick to work, I would call in but if I had a doctor appointment, I would generally take vacation time so no one at work would know I was traveling to the rheumatologist.

I desperately wanted to learn about fibromyalgia to see if there was a cure or at least proven ways to manage the pain and fatigue. Eventually I had to give up my career and focus on my health. My family became educated about the condition and they understood my situation. So, then I began to own my situation and share my story. Amazingly, as word got out, many neighbors in my area contacted me to share similar frustrations. Healthcare in rural areas is in short supply, doctors are overloaded, hospitals are money-making machines and patients are deliberately kept uninformed. I firmly believe if not for the concern and care of one nurse practitioner who knew me personally, I might still be switching from prescription to prescription with no answers.

Unfortunately, ten years later, fibromyalgia is still very misunderstood. Based on my experience, I have learned to share about my fibromyalgia life, to advocate for hidden and chronic illness, to educate people about fibromyalgia and to encourage those on a personal journey to keep fibro from taking over their lives!

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Getting to know our Team of Advisors – Emilie

Posted February 2nd, 2015 by

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia.

About Emilie (aka Memmie)
Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable.

Emilie on patient centeredness
Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best.

Emilie on being part of the Team of Advisors
It was really special to be chosen, I didn’t ever in a million years think I would be chosen. When I got to the interview part I thought there’s no way they’ll pick me. When I found out I was chosen I was really excited because I felt like I had been to enough doctors in my life that I had something to share. I hoped that we could help researchers study the things that would be relevant to us — the collective us — instead of just the things they wanted to know and they wanted to study.

Being part of the Team of Advisors makes me feel like I’m more in control, like an expert about my own body. When you go to the doctor, they think they know exactly what’s happening — they’re going to treat it they way they treat everyone else with fibromyalgia or Sjogren’s or arthritis. It’s great to be able to have input to help doctors understand that we need to be treated as individuals and not like a disease name. Just because I have migraines, does not mean my migraines are the same as someone who just walked out of the exam room with migraines.

Others members on the site have contacted me because I’m on the Team of Advisors, and they’ve seen my picture or seen my name and have said “I’ve seen what you’re all doing, and I went to your page and I see you have some of the same things I do and I found you and I thought you could be a good resource for me.” So sometimes I’ve been able to help out and that has been nice.

Emilie on tracking on PLM
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better. When I go to my doctor and they ask me how things have been, I can tell them that things have been up and down, and sometimes there have been more good days than bad days.

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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!

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2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – 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.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Getting to know our 2014 Team of Advisors – Becky

Posted November 10th, 2014 by

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.

About Becky (aka Rebelor)
Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing.

Becky’s view on patient centeredness
Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.”

Becky on being part of the Team of Advisors
“Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!”

Becky’s military background
“I’m a retired Flight Nurse and started my military career in 1976 as an Intelligence analyst in the U.S. Army. I was initially assigned to Fort Bragg in the 7th Special Forces Group and went to jump school at Fort Benning in September of 1976. I made a total of 16 training jumps between school and my 3-year enlistment. I left the Army and started a family, but returned to the Air Force Reserve in Tampa as a Flight Nurse. I deployed in support of Hurricane Hugo, Desert Shield and Desert Storm, where I worked in the Aeromedical Evacuation Control Center in Riyadh, and then in this faraway location in a Mobile Aeromedical Staging Facility.

In 2003 I was activated and deployed to Europe as the Director of Operations for all aeromedical evacuation from OIF and OEF. It was an enormous job that took me from England to Germany, Spain, Italy and Kuwait. I flew 300 missions on the C-141 and C-17, moving 10,000 patients from forward areas to the U.S. After my return to the U.S., I had to return to my civilian job as a Family Nurse Practitioner. It was very difficult to manage the deployments and military career with my civilian career. My last 5 years in the military I worked at USSOCOM as a Family Nurse Practitioner and the chief of the clinic. 25 years of service. I was medically retired from the Air Force after I started having seizures in 2008. I am an alumnus of the Wounded Warrior Project, and my husband is the President and CEO of America’s Warriors Partnership.

As a female veteran, I am very much concerned about how we handle multiple roles, including transitioning to the civilian world and managing health and relationship issues. I am now using my GI Bill to return to college. Because of my epilepsy and breast cancer that followed, I have noticed a significant decline in my memory and cognition. I am using this opportunity to return to the academic world as a neurocognitive therapist. I’m not sure it is working, but it is challenging me.”

Becky’s passion for Veteran’s issues
“My passion with veteran’s issues is to connect with anyone who has served honorably and is in need of some support. Sometimes, we just need a little drill sergeant telling us to stand tall and carry on. Most of the veterans I know are silent warriors who have successfully returned to their communities and grown into new lives, taking with them the lessons of military service and training. There are some who have been injured in some way or are ill that need extra support, and that is where the Augusta Warrior Project or many other veteran support organizations can be very helpful.

The VA is not equipped to mentor and coach veterans through the turbulent times of life in the same way that many organizations can, but my belief in holistic healthcare is totally ingrained and I know it works. There has to be continuity and someone who understands the system and you. That is why I believe in the advocacy and support offered by some community based veterans programs like the Augusta Warrior Project, the Care Coalition at USSOCOM, the Wounded Warrior Project. They have to be comprehensive in their approach to advocate for a veteran, educate and assist them through school, ensure they have access to health resources and help them become successfully employed. All of this takes an all-knowing mentor over time! The benefits are there, they just aren’t user friendly!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for epilepsy.