5 posts from August, 2016

Paul Wicks weighs in on a new, patient-conceived project

Posted August 22nd, 2016 by

Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one.

Since his diagnosis in 2006, Steve has made it his mission to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., to multiple residences across the country that offer pALS independent living alongside 24-hour care.

Steve sat down with us last week to share about his latest project: producing a series of educational short videos to help caregiving and medical staff better understand the unique care needs of pALS.

But what does this patient-conceived project mean for research? We caught up with our VP of Innovation, Paul Wicks, PhD., to chat more about this project from a research standpoint. Here’s what he had to say:

Working with members for research is in PatientsLikeMe’s DNA, but this collaboration with longtime ALS member Steve Saling (SmoothS) takes it to another level — the project was conceived and driven by Steve. What do you think about this unique partnership? What makes it different than other projects, and what are your expectations? 

There is certainly a lot of buzz out there about being “patient centered” these days – there is a risk that it’s tokenism rather than truly empowering – which means giving up some degree of control to others. In our case we’ve offered Steve access to powerful survey tools and our highly engaged population so he can develop his research about the experiences of other patients like him to help shape the services he designs. That’s really the core of what we do here, bringing the patient voice to decision makers in healthcare, and the reason this is so powerful is that as an architect, as an advocate, as a leader in the space, we’re helping Steve to make better decisions about the unmet needs of his community. My hope is that by giving people an anonymous survey they can complete at their leisure from home or with the use of assistive technology that we might hear from people with ALS who don’t normally have a voice.

In its early stages, the survey was more geared towards pALS and cALS receiving and giving institutional care. Can you talk about the evolution of the project with Steve to include those not in a care setting like that, too? 

We’ve been following Steve’s pioneering work in developing his ALS Residence Initiative for a long time, in fact I’ve had the pleasure of meeting him for a beer a couple of times and I even mentioned it in a TEDx talk as far back as 2010. As a researcher with 13 years experience in ALS I know that while residential care is the right fit for some people with ALS, others don’t have that option or couldn’t imagine being anywhere other than their homes. We also recognized that people have a mix of caregivers, both informal (e.g. spouses, children) and professional (e.g. home help, nurses) and that many patients have a blend of care from different sources throughout their journey. We also wanted to broaden the survey as much as possible so that we could hear from as many people as possible.

One of the goals is to learn from members to get more background context for a series of educational caregiver videos that Steve is producing and PatientsLikeMe is also sponsoring. What else do we hope to learn? 

When you or a loved one is diagnosed with ALS, you get a lot of educational material about the disease. It’s full of statistics and medical jargon about neurons and genetics, but you don’t get much support about how to live with it, how to cope. That could be something as simple as little tips for coping with weakness to something as complex as how to choose the right wheelchair or how to safely transfer with a hoist. Neurologists and experts and professionals can advise and consult, but in most cases they haven’t been there day after day to assist with the basics of daily life that become so hard with ALS, so I’m hoping that with our help Steve can build a permanent resource that will be a great “how to” guide for practical (and sometimes even awkward or embarrassing) topics that people encounter every day.

Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS? 

Fear of the unknown is a big one – although we’re seeing increasing awareness about ALS thanks to the Ice Bucket Challenge and movies likeThe Theory of Everything, most people don’t know what ALS is going to involve for them when their loved one is first diagnosed. Many people will want to tiptoe gently in the shallow end of knowing about it rather than diving in at the deep end – it can be hard enough coping with the issues in front of you without having to worry about problems that may or may not arise further down the line. Unlike something like cancer we also lack treatments in ALS, so it can feel like you’re just waiting for the next symptom rather than actively fighting it with drugs or surgery. Perhaps this is just bias, but ALS also tends to affect some of the strongest and most courageous people I’ve known and it can be hard for them to accept that they need help from others – they’ve often been successful professionals or highly active people and so admitting that they need help to walk or to get dressed doesn’t always come naturally to them.

Is anyone else doing research projects like this one that you know of?  

Over the years I’ve seen a little bit of relatively small-scale qualitative research like this published in the main ALS Journal usually from nurses, physical therapists, or occupational therapists, but I’m pretty confident this is the first conducted by a patient!

 

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Steve Saling’s patient-conceived ALS project

Posted August 15th, 2016 by

Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the country that offer pALS independent living alongside 24-hour care.

His latest project is producing a series of educational short videos to help caregiving and medical staff in nursing homes and other health institutions better understand the unique care needs of pALS. But before he can create these videos, he’s asking other PatientsLikeMe pALS to help him get started by sharing care experiences in an upcoming survey.

We caught up with Steve recently to chat more about this project. Here’s what he had to say:

You’ve teamed up with us to conduct this survey as part of a larger project you’re working on to create a series of short, educational videos for caregivers of pALS in institutional settings. Can you tell us what inspired you to do this? 

I want to make these videos because it is my nightmare to go to the hospital or live in a traditional nursing home and be treated like a product to be taken care of and kept alive instead of living a life. I have a handful of friends, including Patrick O’Brien and Ron Miller, who have survived institutional living. Their stories were horrible but weren’t about mean or cruel caregivers as much as about ignorant caregivers. I think everyone should be able to live in an ALS Residence but, recognizing that that isn’t going to happen for most pALS in the short term, I want to provide a quick easy way to orient and educate well-meaning staff so that taking care of a pALS, who may not be able to speak or breathe, is less scary. If there is fear of the unknown, let’s remove the unknown.

Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS? 

This is very true and these videos will not attempt to be very specific in detailing care needs. But I believe there are some universal truths that will apply to most pALS like non-verbal communication, range of motion, and emotional lability. There should also be a basic understanding of what ALS is and what ALS is not. The Ice Bucket Challenge made everyone aware that ALS is a wretched disease but very little understanding of what ALS is. Institutional caregivers need to know that pALS minds remain sharp and our senses undulled. Like a PatientsLikeMe button of mine says, “ALS has stolen my voice, NOT my mind.”

Similarly, why do you think there’s more research needed here and a need for educational videos?

I think a lot of caregivers are intimidated by the unknown and there is a lot unknown about ALS in the long term care industry. If successful, this video series will begin to fill that gap.

What can you tell us about the series of videos? What is your vision for these? 

I hope the videos become a valuable resource for pALS living in or considering moving to a nursing home or chronic hospital. Even someone going to the hospital for a multi-day stay should benefit. I want them to be what pALS would tell the staff if they could speak themselves. The intent is to create a series of six, 5-6 minute videos that would each cover a different aspect of providing excellent care for pALS. There would be a video for understanding ALS, non-verbal communication, range of motion, emotional lability, patience and compassion, and maybe even one for being a good patient. If successful and well received, this could be the beginning of an ongoing series.

What would you like to take away from this survey? What kind of information to you expect to get? And why is this important for your larger project?

I hope to get a big response so we know that the problem is real. I am counting on friends and family of institutionalized pALS to speak in their behalf if their loved one doesn’t have regular access to the internet. Right now, the topics are based on my fears and a small core of brainstormers. I would like to greatly expand that group to determine what the real challenges are that pALS face. I would even like to solicit video questions that may be in the final video.

After the survey, what are the next steps for this project? And will you be asking the community for any further insight?

I would like to create a focus group out of the willing poll takers. This should be a community project. We will work with a professional filmmaker to storyboard each of the videos along with identifying a recognized expert to address the issue at hand. The filming and editing will take place and there will be a grand release, hopefully with much fanfare and putting PLM in the spotlight for making it happen.

Is there anything you’d like to say to your pALS on PatientsLikeMe? 

Kick ALS’ ass every day. Live long and prosper. Life is good.

 

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The Magic Pill: A new 21-day podcast challenge

Posted August 12th, 2016 by

Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off on September 1.

Co-hosted by Eddie Phillips, the director of the Institute of Lifestyle Medicine at Harvard Medical School, the podcast is all about shifting our mindsets when comes to exercise and getting active. It’s not about telling you what you should or shouldn’t do — instead, the goal is to inspire listeners to get excited about moving more and to do what you can.

Each day, you can tune in to hear about the science behind exercising, helpful tips, and stories from both athletes and people who’ve never run a mile. Check out the pilot episode for a preview!

Before the challenge starts, head over to the forum and tell us how you feel about getting active: Do you love it? Dread it? And if you do it, what motivates you and how do you work it into your lifestyle?

 

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Patients as Partners: Christel on “finding your tribe”

Posted August 4th, 2016 by

Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering the “life-changing benefits of partnering with peers.”

Whether you are newly diagnosed or a veteran in your health condition, there are always opportunities to learn, share, and create a group of trusted peers who become your tribe. Despite a diagnosis of type 1 diabetes over 30 years ago, it wasn’t until I recently “found” my tribe that I truly understood the life-changing positive benefits of partnering with peers — those who travel along a similar healthcare journey. How did I find my tribe? I created it, using many of the Partnership Principles.

Know Your Needs

In a quest to better understand diabetes and how to manage it, I attended conferences and meetings where experts would stand up and discuss research and treatment plans. These sessions were helpful, but what shocked me was where I truly learned to understand daily life with my disease: my peers, during rapid-fire discussions in hallways or sitting around a lunch table. We began to talk beyond the medical management and focused on how to “live” with diabetes.

I realized that there was something missing that was needed in our community: a patient-led psychosocial idea exchange where we could share our fears, frustrations, and tips in a safe, protective environment where no one felt judged or criticized. The Diabetes UnConference was born.

Share Responsibility

I couldn’t do this alone. I asked for help from a group of people impacted by diabetes who I trusted: my peers. Those whose wisdom I sought out and those I admired for their ability to be honest and supportive became the facilitators for sessions discussing intimacy issues and burnout. They helped others share their secrets by creating a sacred space where social media was not allowed to penetrate. Our peers are our experts and by acting as partners, we have the opportunity to switch roles during discussion.

Christel and peers at the Diabetes UnConference

 

Respect Each Partner

Part of our commitment to each other during the conference is to check in frequently with these questions: “Do you feel welcomed? Do you feel valued? Do you feel respected?” Many of the conversations that occur during sessions are deeply personal and even if we have different attitudes or treatment plans, the overarching goal is to learn from each other. We have had attendees diagnosed in the past six months sitting next to peers diagnosed over 50 years ago — and each said they had learned something new and were able to find a connection, because they vowed to respect their individual experiences.

Listen and Communicate

I value the communication between my peers during The Diabetes UnConference, because in listening to others and being able to openly share my experiences, I have learned new ways to manage daily life with diabetes. While I may not utilize a particular treatment, learning about it from my peers is crucial, because I never know who I might meet in the future who is interested in that particular issue. Connecting and communicating with others widens my partnership with my peers through listening. Many of our attendees say that because of what they learned at The Diabetes UnConference, they have made positive changes to their daily management and have achieved measurable positive outcomes. I’m one of those peers.

Evolve and Accept Growth

In addition, by listening to the feedback my peers gave me from the first conference, we have evolved. One attendee said that they wished those who love us — spouses, significant others, parents, children — were able to have the same type of psychosocial support and safe, non-judgmental environment. Many other peers agreed, and the next year, we created that space for a new group of peers: PLUs (People who Love Us). Partnering with my peers allowed us to grow and welcome more partnerships that didn’t exist before.

Reflect, Evaluate, and Reprioritize

As The Diabetes UnConference matures, I have found my tribe and helped to grow partnerships that have turned peers into trusted confidants and friends. Many attendees check in with each other on a regular basis, despite living across the country. My peers and I are looking to expand ways to have those trusted face-to-face conversations in a safe environment to others who can’t attend a conference due to location or financial constraints. We are looking for what’s missing and finding ways to fill that gap.

My experience with founding The Diabetes UnConference has me wondering how many other health conditions could benefit from this type of psychosocial idea exchange and how others could partner with their peers. Using these Partnership Principles offered up by the PatientsLikeMe Team of Advisors is a great place to begin.

 

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“I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference

Posted August 2nd, 2016 by

August is Psoriasis Awareness Month, and we’re kicking things off with a recap from the FDA’s public meeting on psoriasis back in March. The meeting was part of their Patient-Focused Drug Development Series that aims to bring the patient voice to research.

Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe notes that, “The most effective part of the meeting was the patient stories. Even though a lot of quantitative data has been gathered by the FDA, they’re learning firsthand how difficult it is for these patients. Having an event that’s so patient-centric – where people are telling their stories and those attending can submit questions through the webinar – really lets patients make their voices be heard.”

The PatientsLikeMe psoriasis community also gave feedback through a survey in the weeks before the meeting, and this data was shared with the FDA. Check out the full report of what members had to say.

And Dan, one of our community moderators here at PatientsLikeMe, attended as both a member of our staff and a patient. We caught up with him to chat about his experience. Here’s what he had to say:

What was it like to attend this event as someone living with psoriasis?

I have had psoriasis for 23 years. I wasn’t alone, as my sister and brother had very mild symptoms, and my father and his brother had more moderate symptoms. So for me, having the disease itself wasn’t scary from a medical point of view. But I certainly suffered from social stigma as plaques cover all of my legs, arms and much of my torso.

As I learned from meeting my peers at the PFDD psoriasis conference, many psoriasis patients tend to hide their symptoms as best as they can by wearing clothes that conceal it, and by not participating in activities that would expose it to the public. I, too, was very challenged by the fact that my condition was so visible.

I also have ADD and an acquired learning disability (auditory delay due to an early childhood fever), on top of which I experienced a fair amount of trauma, which resulted in PTS.

I think this is probably why my symptoms were so bad since psoriasis is closely linked to stress and mental health. As a teen, I was grasping for coping mechanisms and esteem builders and I found solace and comfort in climbing, swimming, and hiking outdoors. When I started to experience my psoriatic symptoms, I couldn’t imagine giving up these activities. And so, I simply had to endure and explain my disease to everyone. I rarely, if ever, met anyone else who allowed their psoriasis to be as visible, and I felt extremely isolated. Not to mention my peers also had little or no exposure to people living with this condition aside from myself, thus increasing my issues with stigma.

Going to this meeting was amazing; I was surrounded by patients just like me for the very first time.

It felt incredibly rewarding! However, because I’d spent so much effort over the years suppressing my issues with stigma and the discomfort of psoriasis, it was challenging to process the emotions that came flooding back as I listened to the other patients’ experiences. I was almost brought to tears more than once. Not just for my peers and their suffering, but in recognizing a new awareness about my experience.

My peers were all gathered here to advocate and to express their hardships regarding psoriasis, and in the process they demonstrated incredible personal strength in dealing with this condition and speaking up about it. I was really impressed and inspired.

I also realized how strong I had become by managing the symptoms and stigma with little to no peer support for so many years. This in itself was also a very powerful experience; incredibly validating.

What were the most talked about issues at this meeting?

Much of the meeting revolved around two main issues: the pain and discomfort of psoriasis, and the stigma of having a visible and disfiguring illness. But also many interesting aspects of the patient experience were brought up. For example, nearly every African American present as a patient reported disparities in diagnosis. They all reported that their physicians were not aware that African Americans could even have psoriasis, leading to years of medications prescribed for infections they never had, side effects, and feeling that the medical system had completely failed them.

The prominent topic was around the levels of pain and itching that people experience with this disease, but then it migrated to include discussion of the cognitive and emotional toll of the illness. The level of patient suffering was palpable and very powerful, and sent a strong message to the FDA and the community attending.

Some people experienced constant burning feelings, like their skin was on fire. There were descriptions of feeling like their skin was encased in a cast of plaques, stiff, and uncomfortable, as well as sharp pangs of the open cracks and sores, which any movement or itching created. For many the pain was crippling.

There was also a lot of mention of the stigma experiences from patients recalling their experience as young children and adolescents, managing the emotional challenges of growing up combined with having a misunderstood and stigmatizing skin condition.

Psoriasis manifests in flakey white scales on top of fiercely inflamed red skin, which often cracks open and bleeds. Most people that we meet in our daily lives have no idea what psoriasis is, and are often afraid to even ask. This can lead to us being treated like we are infectious. In many ways it’s hard to blame them, the affected areas often look like Hollywood made-up zombies…

We also we leave bits of ourselves everywhere in the form trails or even piles of silvery flakes on chairs, under our desks, all over the house, and the cracked inflamed skin often leaves blood spots on any light colored clothing, bedding, and furniture.

I have always stepped past my shame and used the opportunity to apologize for the gross mess that I leave because it gave me an opportunity to educate people about what I have so hopefully they wouldn’t be scared of me, but many others in the group reported having a really difficult time talking about their illness with others.

Many coping mechanisms were described like avoiding dark clothes where the flakes would be very visible, or avoiding light clothes as they could highlight the blood stains. Many people also talked about always wearing long sleeves and pants, and going so far as closing the cuff’s of their shirts and pants with adhesive tape to prevent the flakes from spilling out everywhere in public.

Everyone also described this constant emotionally taxing vigilance of trying not to itch or scratch our affected skin as it makes more flakes, which is hard because of the overwhelming itchiness and burning pain. To compound this, many patients in the room had psoriatic lesions on their buttocks and genitals. Can you imagine being in work, or class, out shopping and being consumed with trying to manage the urge to stick your hands in your pants and just itch away? A tragic reality that results in shame, distraction, and, in the end, exhaustion.

Then there is the ever-present social stigma risk mitigation; always shaking out your collar, and sweeping flakes off one’s shoulders away so you don’t look like your are a walking trail of dandruffy, diseased skin.

Even when we are surrounded by educated and empathetic people we know or at least project that they are all affected by our appearance and the messes of “bio waste” we leave in our wake, there is this constant knowledge that we are less desirable as friends, lovers, and even just associates and co-workers; as one panelist reported that they felt as though people treated them as if the were a leper. It’s nearly impossible to disassociate our identity from our disease, because everyone sees our disease right in front of them.

There were a lot of reports of absenteeism from things like school, work, and even fun social events like going to the beach; anywhere public where the emotional effort of managing stigmatization 24/7 was simply too much to handle on a day-to-day basis. There were even questions brought up about whether we were more susceptible to STDs. The meeting facilitator at the FDA explained that they had never heard so many patients attribute such levels of emotional and cognitive fatigue, and brain fog/mental exhaustion to psoriasis. She seemed to be recognizing this as a new and disabling symptom. The FDA was listening!

In the end, we heard each other’s voices amplifying the realities to the FDA and the public that psoriasis clearly affects people on very deep levels; the obvious physical pain and itching, as well as the social stigma fears; the internal shaming and awkward external conversations we have with everyone we meet about our bodies and how our bodies corrupt everyone else’s living and work spaces.

I think the prevailing message was this isn’t a painful and uncomfortable skin issue, this illness touches every aspect our lives especially our mental health.

The irony is, like all autoimmune disease, psoriasis is exacerbated by stress, and having psoriasis causes a lot of stress. I don’t think the medical community has ever really quite understood the interplay between these symptoms and conditions.

Did you feel like the meeting was patient-centric and that your voice was being heard?

I really felt that we were heard. Everything in the program was designed to capture the patient’s voice.

They had this amazing system set up: the facilitator or the FDA staff would ask a panelist a question, and, as soon as they received their answer, they would turn to the audience and ask us the same questions in a multiple choice format. The community listening online would respond from their devices, and the patients in the audience all had received small wireless handsets allowing us to provide our experience. They would then project the results on large screens positioned around the room allowing us to analyze the answers in real time, often prompting the FDA staff to ask follow up questions so they could really gain an in depth understanding of the issue at hand.

You attended as both a PatientsLikeMe employee and a psoriasis patient. What was it like to engage in something like this with an organization like the FDA with that kind of dual perspective?

I think this was the most difficult part for me for two reasons. I wanted to make sure that I was an active participant as a psoriatic patient, and I also was trying to network with other patients and providers to let them know about PatientsLikeMe, and capture the experience so that I could relate it to other patients like me who may attend future events. It was certainly challenging to do all three at the same time.

Going to this event and participating as a patient meant so much to me, knowing that I’d be communicating my experience to these senior staff members of the FDA who will be guiding the future of psoriasis therapies. And hearing other people’s stories about their experience really helped me understand more about my own experience. I realized that I had never really fully processed the challenge of having a stigmatizing visible condition. I also realized that I had a strength that I had not recognized — although my psoriasis has been very challenging, I have managed to live a very full life and have been able to manage the emotional toll that psoriasis exerts. I also felt a little absolved: Has my depression and fatigue been partially fueled by my psoriasis? Have I been shaming myself for years for not overcoming these two issues, when they were not moral failings but part of a larger systemic health condition associated with my autoimmune disease?

On the whole, I’m very glad I went to the PFDD conference on psoriasis; it affected me profoundly and I think that the FDA really was listening and absorbing the experience of the psoriasis patient community. I was proud to be there and I was inspired by the strength of my peers. I really thank PatientsLikeMe for providing me with this rare once-in-a-lifetime opportunity.

 

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