8 posts tagged “conference”

Communicating drug risks/benefits so the message really gets through

Posted February 22nd, 2017 by

Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts.

Sally, who also participated on the roundtable panel, says requests for patients to participate in events and meetings such as this are increasing: “There’s a lot of interest from the pharmaceutical industry and regulators to hear directly from patients about their experiences. Jim’s presentation was quite powerful and provided a perspective that most in the room had not heard before. The positive response from the audience reaffirmed the value of bringing the patient voice into the full lifecycle of drug development.”

We asked Jim to share his experience (from the patient perspective) attending and presenting at the conference. In his own words:

When it comes to treatment options, patients like us routinely face difficult treatment decisions such as: “Drug X can treat symptoms of your chronic condition and might improve your long-term prognosis. But, 5% of patients on Drug X experience serious side effects, and in rare cases, complications can be fatal.  So: is this a risk you’re prepared to take?”

Question: Now, suppose you worked for a pharmaceutical company or the FDA and were assigned to inform patients like us about Drug X’s drug safety and risks/benefits: what should your primary goal be… provide clear, comprehensive and scientifically accurate advice about all of Drug X’s pros and cons?…OR… help patients review and evaluate information from any source — not just your communication, but also sources like WebMD, PatientsLikeMe, friends and family, and social media — in order to make more effective treatment decisions for themselves?

For participants attending the Drug Information Association (DIA)’s Pharmacovigilance Conference January 17‑18, 2017, this wasn’t a hypothetical question, because their job is to design and develop drug advisory communications for patients and providers.

I recently joined PatientsLikeMe’s Team of Advisors for 2017 and belong to three PatientsLikeMe patient communities (MS, chronic lymphocytic leukemia, and aortic valve insufficiency). My plenary presentation focused on how patients would answer the question above — or, more accurately, how I would answer it.

I began by asking conference participants to raise their hands if they’d ever taken a medication (100%); how many had ever read an entire drug insert from start to finish (≈ 2%); and finally, how many had read a few targeted sections of a drug insert (≈ 50%). The key points here were that (1) regardless of what information they should seek in an ideal world, practically all patients, even if it’s only for a headache or a chest infection, tend to “zero in” on just the information that seems most vital to them for making a treatment decision. And, (2) in the case of serious chronic conditions, the way newly-diagnosed patients “zero in” is dramatically reduced; so, (3) safety communicators should focus more on helping patients recognize the  value of considering more useful information rather than less when reaching a genuinely effective treatment decision, and feel confident in their ability to evaluate any source of information available to them.

To illustrate, I walked conference participants through four treatment decisions I’ve personally had to make to show in each case: (a) what objective information — a tiny fraction of everything available — I actually considered, (b) how my emotions (shock, fear, anger, confusion, etc.) had influenced the way I weighed that information, and (c) the one or two factors that turned out to be key to reaching a decision that was both effective and emotionally sustainable for me.

For instance, when diagnosed with chronic leukemia, I was invited to join a clinical trial.  The key objective information I considered included:

  • Risks of the trial (identified and unknown)
  • the +’s and –‘s of standard 1st-line treatment
  • Requirements for participation
  • Costs of participation.

Emotional factors which dominated my thinking at the time included:

  • Desire for the longest possible remission
  • Logistical complexity of participation
  • Perception of this doctor’s stake in having me join the trial
  • My desire to be a good citizen-hero

And, in the end, the driving factor which influenced my decision not to participate in the trial was the fact that the trial’s logistics would have been incompatible with my work life.

After reviewing three other key treatment decisions in the same manner, I summed up three key observations from the patient’s point of view that drug safety communicators should keep in mind when designing their communications:

  1. Personal, emotional and family factors dominate most patients’ perceptions of the objective information they look at
  2. Since major health care decisions are made under the press of time and powerful emotions, they generally have less to do with objective facts about a medication than the patient’s feeling about what’s best
  3. Objective information about a treatment’s +’s and –‘s counts, but only at certain points in the patient’s decision-making process if/when s/he feels calm and self-confident enough to do so

With these in mind, my key takeaway for conference participants was that they should design their drug safety communications first to help patients find a calm, centered place from which to consider and weigh drug information from any source, and only second to focus on the most important, scientifically accurate information about a drug’s risks-benefits. Those would be my priorities for drug communicators…. but would you agree?

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

Posted November 18th, 2015 by

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

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

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

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

Involving patients from the get-go

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

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

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

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

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

Looking at it from all angles

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

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

Patient advice for a patient-centric event

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

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

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

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

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

Posted November 4th, 2015 by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

L: Most definitely!

What stood out to you as an attendee?

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

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

What was the most interesting takeaway for you?

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

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

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

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

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

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

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

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A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

Posted October 27th, 2015 by

Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo).

We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on the event. Here’s what he had to say:

Why did you want to be part of the FDA public meeting?

On the day I was diagnosed, back in 2012, I spent a great deal of time reflecting on my life. I thought a lot about how Parkinson’s disease will impact me and my family in the future. On that day I made a commitment to myself that I was going to take control, to the best of my ability, on the course of the disease progression, and would do anything possible to find a cure. I was determined to educate myself as much as possible about the disease, put together the best possible health care team, learn all I could about treatments currently in research, and participate in clinical trials. Parkinson’s was a new challenge in my life and I intended to tackle it like I would any other challenge that I had faced in the past. Along the way in this new journey, I became more publicly involved as a PD advocate, both for advancing research as well as supporting newly diagnosed patients. So, when I noticed the FDA announcement regarding the meeting, I decided to send in my comments and thoughts in hope that they might be helpful, to whatever degree, in moving research along for better treatments.

What did it mean to be accepted?

When I submitted my comments I never expected to be asked to participate on one of the panels, nor was I intending to attend the meeting, which was on the eve of a religious holiday. I was quite surprised when I was contacted by the FDA, but was caught in a dilemma. Participation meant missing an important time with my family. However, when we discussed it, we all agreed that this was such a great opportunity, and honor, to be able to represent the needs of the millions of Parkinson’s disease patients worldwide to the FDA. There was no way I could turn down that kind of invitation.

What was it like being there as a patient representative at the FDA event? Did you feel like your voice was heard?

I’ve participated in a number of seminars and conferences in the past, so there wasn’t much difference with the arrangement for this meeting. If anything, it was much more low key. Nevertheless, I definitely had a sense of awe when I arrived at the FDA complex. There were multiple buildings all over the sprawling campus. It immediately reminded me of the importance of this event compared to others I’ve attended. We were going to be presenting to the Director of the FDA’s Division of Neurology Products and nine other senior staff members. This is about as high up as we could go in our advocacy to advance Parkinson’s disease research.

During the meeting, it was difficult for me to tell how our presentations were going and whether they would have an impact on the FDA’s staff, although it appeared to me that they were listening intently. I was certainly concerned about the limited amount of time I had to speak. Several days later, though, I watched the webinar presentation of our event and I felt that we hit on the large majority of the most important areas of concern that our community has regarding current and new treatments. Only time will tell if the FDA will act accordingly with our hopes and suggestions. One small item that I noticed which suggests that they were listing involves a question on the Patient Questionnaire at the meeting. We were asked to choose from a list of Parkinson’s symptoms the ones that were most impactful on our lives. In my presentation, along with several of the other panel members, we noted that they didn’t include pain or orthostatic hypotension, two very common symptoms, on their list. I did, however, see that on the new follow-up survey the FDA is conducting, they have added both symptoms to the bottom of the list. So, at a minimum, they were listening as we spoke about these debilitating symptoms.

What did you learn while you were there?

Well, I can’t say that I learned much about the disease while I was there, but, of course, that wasn’t the purpose of the meeting. Our presentations were intended to educate the senior staff and decision makers of the FDA. That being said, what I did learn was the amazing dedication and effort that members of our Parkinson’s community will undertake in order to be heard at a forum. Members with severe difficulties traveled from all parts of our country in order to be able to speak for a few minutes. I was truly honored, and most definitely humbled, to be part of a panel with these dedicated individuals. If you haven’t yet seen the archived presentation of the meeting online, I suggest that you at least watch the members of the first panel speak to the FDA about their symptoms, it was amazing.

What are your hopes for future research in Parkinson’s disease?

We were asked by the FDA to limit our answers to their questions in the context outside of finding an actual cure. In addition, we were mainly directing our responses to the FDA’s role of controlling the approval and distribution of prescription drugs, more so than studying the potential impact of alternative therapies such as exercise, vitamins or other supplements, or the development of new medical devices to assist with symptomatic control (all of which are needed). So I’ll stay within that premise.

I see the need for a three-direction approach for future research. First, we need to continue and expand research into the biological science of Parkinson’s disease, as well as other neurological diseases with similar developmental processes, such as Alzheimer’s and ALS. With a better understanding of the disease cause, pathways, and progression, we will have a much greater chance of finding better treatments and potential cures.

Second, I would like to see research into the development of better symptomatic treatments. These treatments should be effective for multiple symptoms, have fewer disabling side effects, and have extended release and longer term activity. Although today’s treatments are somewhat effective treating motor impairment, they are greatly lacking in effectiveness for many other non-motor symptoms. Many of the drugs have side effects that can be more disabling than the symptoms they treat. In addition, it would be desirable for new treatments have ease of administration, such as oral, sublingual or inhalable as opposed to invasive surgery or device implantation.

Third, and most importantly, we need research to discover interventional treatments that can slow or halt the disease progression, if not totally cure it. This research should target the development of new drugs and vaccines that can intercede along all of the numerous biological pathways as the disease progresses. For example, we would find means to either stop the misfolding of proteins, prevent proteins already misfolded from accumulating in brain cells, or eliminate misfolded proteins which have already accumulated and are leading to cell death. Finally, I would like to see more research in alternative treatments, such as stem cells and human growth factors, in addition to traditional drug development. It’s imperative that the FDA allow our scientists to be as innovative as possible as they attempt to find treatments and cures for the most complex illnesses we have in brain diseases. With new interventional disease modifying drugs, along with improved symptomatic treatments and a proper exercise regimen, most, if not all of us dealing with Parkinson’s disease would be able to live active and productive lives for many years beyond our diagnosis.

For more information, check out the full video of Gary’s panel. And don’t forget to visit the site to connect with Gary and the more than 11,000 other PatientsLikeMe members living with Parkinson’s disease.

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H@cking Medicine: Open Up!

Posted October 21st, 2011 by

hackingmedicineThis weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things).  Those are three concepts near and dear to us here at PatientsLikeMe.

The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare.  According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost.  We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.”

To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with the available resources.

Read more about this subculture of hackers on Wikipedia and follow the H@cking Medicine conference updates on their website and Twitter.


PatientsLikeMe and The Power of Peers

Posted September 16th, 2008 by

Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia.  The theme was “The Power of Peers.”

Power of Peers

While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I found very interesting. A talk called “I Am Not My Illness: The Importance of First Person Language” by Stephen Propst prompted a lot of discussion from attendees about the distinction and power of saying “I am bipolar” versus “I have bipolar.” He noted that people with other conditions do not say “I am cancer” or “I am diabetes” and that the language we use has the power to change how we think about the intersection of our health and our identity.

As I listened to people hashing out the details and implications of being img_1024.JPGmore thoughtful with our language, I thought more about how it relates to the collective power of peers.  Face to face conversations are a time-tested method for empowering others and making change, but having conversations online can magnify your message far beyond a two person discussion. Having read over 2000 threads in our Mood community in the last 7 months, I know that our members empower one another on a daily basis.  While a single forum thread may have 20 replies, it can be viewed by hundreds of people, escalating the impact of the conversation far beyond its participants. Add to that the ability to see each person’s status from their shared health data profiles, and everyone has the opportunity to learn in multiple ways on PatientsLikeMe.

This single lecture sparked great conversations among the few hundred folks who attended the event, and now the conversation is continuing with our members. Empowering patients through conversations and shared data is producing real change: that’s the power of peers.

PatientsLikeMe member moakes


PatientsLikeMe at the Young-Onset Parkinson’s Network Conference

Posted August 12th, 2008 by

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.

Moakes and Pwicks at YOPD conference

The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.

As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.

PatientsLikeMe member moakes


PatientsLikeMe at the Toronto ALS/MND Symposium

Posted December 7th, 2007 by

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site!

plm-stand.jpg

Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for us were:

– Do people really want to know about their progress?: Our answer would be that PatientsLikeMe allows them the option to find out if they choose. Many professionals feel that it is their responsibility to protect patients and carers from distressing information. However, we believe that everyone’s information-seeking preferences are different and by giving people the choice we are empowering them.

– Don’t you get a lot of people pushing their products?: We have a few ways of preventing this. First there is our community of members, who are a very switched-on group. If anybody posts something suspicious or overtly commercial we normally hear about it in a matter of minutes and are able to respond appropriately. Secondly we have a clear emphasis on sharing what has been helpful, but we ask people not to try and persuade others to change their regime; that is a choice for them to make. Finally, by giving patients the tools to look at each other’s outcomes, we encourage people to put their data where their mouth is. If “supplement x” has worked wonders for them, we would encourage them to enter in their data so other people can see for themselves.

– What does this cost patients?: Nothing! Because our business model involves partnering with pharmaceutical companies to encourage their participation in disease communities, we don’t have to rely upon advertising, spam, or subscription fees to sustain our activities. We feel that being a neutral space from the perspective of industry and non-profits is best for everyone.

– Can we tell our patients about this?: Sure! We’d like nothing more. In the new year we’ll be distributing leaflets to all the ALS/MND clinics we can find so that they can invite patients and caregivers to join us.

On the penultimate day of the conference, one of our research team, Paul Wicks, gave a platform presentation describing PatientsLikeMe and presenting some of the research that’s been carried out on the site.

His talk was met with an enthusiastic response and was identified as a highlight of the symposium by several delegates. Click the video below to hear Paul take you through his eight minute presentation.

Dr. Paul Wicks

Without doubt, one of the most inspiring parts of any conference is meeting up with our users, and we were thrilled to see a few of them at the conference. We heard how PatientsLikeMe helped them understand more about their condition, meet other users in their area, and made them feel like they were a part of the fight against ALS/MND. Next year the conference is in Birmingham, UK, and we look forward to having lots of ground-breaking research to show off there!

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