14 posts from April, 2015

Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Posted April 30th, 2015 by

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started sharing their data with leading researchers to debunk alternative “cures” for their disease and even started taking trials into their own hands. Read what else Paul had to say here.

And if you’re interested in learning more, click below to watch Paul talk about patients leading the direction of clinical research in an interview with BioMed Central:

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Update and results – the Patient Voice Analysis study

Posted April 27th, 2015 by

About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.

A little bit of background
Dr. Little had done some earlier work and compared the voice signals of people who were living with PD to those of people who were not, but we wanted to take that to the next level. With their PDRS, they shared how Parkinson’s was affecting them, and we were able to match their self-reported scores to the sound of their voice.

By matching a PDRS to voice samples, we might develop the ability to predict PDRS scores (which takes a few minutes to complete) by using the voice test (which only takes a few seconds). We might also be able to detect more subtle changes in people’s Parkinson’s through their voice than we can through the PDRS. This is what Dr. Little is working toward, and all the voice samples you donated will help make it happen.

Community results, starting with the basics
Who took part, from where, and how many PDRS scores could we match to voice recordings?

  • Most of the recordings came from the U.S. (81%), with others coming from the U.K. (12%), Canada (5%) and some from Australia and New Zealand, too.
  • 677 of you recorded 851 voice samples
    • Since our original goal was 500 samples, you blew that out of the water!
  • 114 of you took the test two or more times, and one community member even contributed 10 recordings!
    • For those that took part more than once, we can start to examine how your symptoms changed over time.

Why voice recording quality matters
For the PVA study, you were able to use your landlines, cell phones, even Skype or Voice-Over-Internet-Protocol (VoIP) to submit your voice samples. The recording quality varies depending on which type of call you used, occasionally creating technical issues in analyzing the voice samples.

For example, if you’re using a cell phone in a busy restaurant, your microphone will automatically get louder so that the person you’re talking to can hear your voice better and without distortion. But that also changes the loudness of the background noise. In this study, that automatic change could actually affect the quality of the voice recording, so we have to identify where this has been an issue and find ways to overcome it.

Partly because of this, we’re still analyzing the voice samples in detail. We’re looking for subtle markers of Parkinson’s, such as fluctuations in volume, pitch and breathiness. We’re also training intelligent algorithms to identify when the quality of the voice recording is strong enough so we can develop a consistent and repeatable process.

You be the researcher
To give you some idea of what we are looking for in these voice recordings, we wanted to share a couple with you. The first is someone living with severe Parkinson’s, who scores 55 on the PDRS. You can probably hear the noticeable tremor in pitch, and the occasional short breaks in voicing.

The second is a recording of someone with mild Parkinson’s, who has a very low PDRS score of 1.

Can you hear the subtle drift in pitch? This is, most likely, indistinguishable from normal pitch drift. Subtle pitch variations such as this are one of the kinds of symptoms that algorithms attempt to identify from these voice recordings, and they contribute towards making the PDRS prediction.

So, what’s next?
At this stage, the PVA project is still just a research tool and isn’t quite ready for clinical or diagnostic use. We’re still working on analyzing the data to compare the severity of voice patterns to the reported severity of Parkinson’s disease. But in the meantime, if you’re looking to share more info with your doctor, the most useful tool is your PDRS score on your PatientsLikeMe profile. It contains items that make sense to a neurologist. If your clinic has access to speech and language pathologists, they would also have the ability to map any vocal issues you may be experiencing as part of your Parkinson’s.

As we continue to evolve the tools, we hope to provide individual level feedback and information for clinicians. But before that can happen, we want to make sure that the data quality is high enough to support drawing clinical conclusions.

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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize

Posted April 22nd, 2015 by

FamilyWize Community Service Partnership is committed to helping improve the health and well being of individuals and communities. High-cost prescription medications can be the cause of financial stress for uninsured or under-insured consumers. In fact, cost is the number one reason people do not take their prescribed medications, which impacts the short-term and long-term health and financial stability of individuals and communities. FamilyWize’s mission is to reduce these challenges by making prescriptions more affordable for all, and helping people and communities live healthier and happier lives.

The FamilyWize Community Service Partnership was established by Dan Barnes in 2005 to help those in Pennsylvania’s Lehigh Valley get the medicines they need and deserve access to. Eight years later, Susan Gilmore, who had spent 25 years with the United Way at the local and national levels, joined the firm, adding her partnership and community expertise to their strengths.

Today, FamilyWize touches families in all 50 states and the FamilyWize pharmacy discount card is accepted at more than 60,000 pharmacies across the country, including CVS, Walgreens, Rite Aid, Kmart and Walmart.

Dan, tell us how you came up with the concept of the FamilyWize card and your vision when you first started.

DB:  The idea for FamilyWize came when my wife, who is a nurse, and I learned that a large part of our community could not afford their medications. With my expertise in wholesale consumer group buying in travel, we knew that I could apply my skills to finding ways to lower the cost of prescription medications.

Our initial idea was to provide a free assistance program to lower the cost of medicine, and with that financial aid, encourage individuals to fill and take prescriptions as directed. This plan ultimately became what FamilyWize is today: a community partner and health and wellness advocate that provides free prescription discount cards to people in need.

From your beginnings in the little town of Bethlehem (Pennsylvania) to the present day, what do the numbers look like?

DB:  It has been a joy to see a small program that started for our local community grow rapidly over the last 10 years into what is now a nationwide community service partnership serving people in all 50 states.

We have the privilege of working with over 100,000 community, public sector and healthcare partners as well as other business partners in this endeavor. Together, we have been able to help 8 million people receive over $2 billion of prescription medications, with cost reductions of over $800 million. This is money that they can put back in their pockets to stretch their budgets and expand resources for their families in the communities where they live.

Here’s a question for both of you: What impact, if any, has the Affordable Care Act had on your business?

DB: Many people that were uninsured and are now able to get health insurance as a result of being eligible through the Affordable Care Act, particularly those that were enrolled through Medicaid expansion, for the most part, no longer need assistance of this kind.

However, there is now a growing number of what we call “under-insured” individuals. This group has health insurance, but deductibles that are so high that their prescription costs are still unmanageable. We estimate that there are still well over 80 million people that need assistance, and because of this, we have established a goal of helping 25 million people save on their prescription medication costs by the end of 2020.

Now Susan, can you tell us a bit about your association with the United Way and how you helped forge that partnership for FamilyWize?

SG:  I was a United Way professional for 25 years and served at the national level with United Way Worldwide and as CEO of the United Way of the Greater Lehigh Valley, PA and in Amarillo, TX.   When we realized the impact that this assistance could have on our communities, we pulled together our partner agencies to try and get this free program out to as many people as possible, including the employees of many businesses that participated in our workplace campaigns. The program grew rapidly into a national effort and created a partnership with United Way Worldwide and almost 1000 of the 1200 local United Ways.

I was asked to join FamilyWize to lead the efforts with our community partners and to provide support and strategy so that together we can reach more people.

And what about your other partnerships – is that 50,000 number correct?

The number of partners now exceeds 100,000. Naturally it’s a challenge to coordinate that many partners, and our partnership with United Ways at the local level has been extraordinarily helpful.

As we learn more about where the need is greatest and where we can be most effective, we continue to add partnerships at both the local and national level. We are privileged to have national partners that include United Way Worldwide, the American Heart Association, the National Council on Aging, America’s Promise, the National Human Services Assembly, and the National Hispanic Medical Association, among many others.

And, Susan, it’s pretty clear that FamilyWize offers people real value. How do you see online communities like PatientsLikeMe adding to that value?

SG: We have learned over the past 10 years that a program like ours only grows through word of mouth. While we have reached 8 million people, it has been one person at a time.

We believe that online communities like PatientsLikeMe are critically important to increasing awareness of our program and helping individuals understand how important medication therapy is and that financial help is available.

Dan, your website says your goal of the FamilyWize Community Service Partnership is to save families and individuals $1 billion on prescription medicine by the end of this year.

What would you consider the biggest obstacles to meeting that goal?

DB: In a word, awareness. We have the tools to help but most of the people who need this help are not aware that it is even available to them. We are closing in on the goal that we set five years ago to save consumers $1 billion dollars on prescription medications, but reaching more people is an ongoing challenge. However, with partnerships and communities such as PatientsLikeMe, we believe that we can reach more people, more rapidly, with the help of trusted voices.

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PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

Posted April 20th, 2015 by

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below.

Hi Tom! Can you share a little about your early symptoms and diagnosis experience?

I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome.

How has your ALS progressed over the past few years?

Thankfully I have been in the category of a slow progressor:

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

Description:

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability)
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best

What sort of advocacy efforts have you been involved in since your diagnosis?

  • PatientsLikeMe (PLM) Member since January 2011.
  • Active with the ALS Association (raised over $80,000 to date) – my most current activity.
  • On 8/2/2011, FM 106.7 The Fan (Sports Junkies) hosted an ALS Awareness Day Interview.
  • March 2012: Featured Interview on PatientsLikeMe (PLM) –Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy.
  • April 24-25 2012 Visit to Capitol Hill with Former Neuraltus CEO (Andrew Gengos) – Summary: I think Andrew Gengos (CEO Neuraltus) and I made a good “team” – Both Industry and Patients “partnering” with a consistent message related to Expanded Access and Accelerated Approval for Rare and Life Threatening diseases such as ALS.
  • Raised over $30,000 for a collaboration between ALS Treat Us Now and the ALS Therapy Development Institute (ALSTDI) and rode the last 15 miles of the ALSTDI Tri-State Trek in July 2012.
  • Presentation made to the FDA CDER on 8/24/2012.

You’re a 3-star data donor on PatientsLikeMe – what do you find helpful about tracking your health on the site?

Because of this site, I think I have the most complete documentation of my disease progression in treatments than anyone in the health industry. It is a great tool and has been unbelievably helpful to me over the last four years. 

Finally, congratulations on your 33-year anniversary! As a father and husband, what’s one thing you’d like to share with the community about ALS and family relationships?

At the end of the day, given all the challenges those of us with ALS face – nothing is more important than your family relationships and the love you share.

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What do you know about stress?

Posted April 17th, 2015 by

This April, some people aren’t thinking about stress – the crazy snows of winter are just about gone, flowers are blooming and temperatures are rising. But with these positive changes comes a responsibility to recognize the importance of stress and how it affects people’s health. Federal Occupational Health (FOH) has deemed April National Stress Awareness Month, and together, everyone can help raise awareness for stress, its causes and how it can be managed.

The medical definition of stress is “a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous.”1 Stress can be acute (short-term) or chronic (long-term), and it causes a wide range of symptoms, ranging from the physical (chest pain, fatigue, muscle tremors) to the emotional (anxiety, restlessness, depression).2 And while acute stress is a natural feeling to experience, chronic stress has been linked to increased instances of health conditions like heart disease, high blood pressure and diabetes.

Stress is experienced by people of all ages, genders and backgrounds – below is what the PatientsLikeMe community is saying about how stress affects them:

“Stress is beyond anything I have ever faced in my life. My tremors all completely out of control. I feel like it is getting too hard to handle. Could I have moved a stage up because of all the stress?”
-Parkinson’s member

“Stress is definitely a killer for me! It multiplies my [fibromyalgia] symptoms by many times and I am extremely stress sensitive. I was a victim of prolonged stress (I have been under a lot of pressure (stress) for over 20 years) and I am convinced that’s why I developed [fibromyalgia].”
-Fibromyalgia member

“I have been dealing with so much stress and anxiety that I have been sick with severe stomach pain, I can’t eat, don’t want nothing to drink. I am just so worn out.”
-Mental health member

This April, visit FOH’s website to learn more about getting involved in raising stress awareness. And don’t forget to share your experiences with stress on social media via the #stressawareness hashtag.

And if you’re living with stress and looking to connect with others who know what you’re going through, join PatientsLikeMe and add your thoughts to the discussions on stress.

Share this post on Twitter and help spread the word for National Stress Awareness Month.


1 http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm

2 http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987


PatientsLikeMe study monitors walking activity in people with MS

Posted April 15th, 2015 by

          

Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS patients. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC April 18-25.

“MS impairs the ability to walk for many people with MS, yet we only assess walking ability in the limited time a patient is in the doctor’s office,” said Richard Rudick, MD, vice president, Value Based Medicine, Biogen. “Consumer devices can measure number of steps, distance walked, and sleep quality on a continuous basis in a person’s home environment. These data could provide potentially important information to supplement office visit exams.”

The study was designed to assess the feasibility of using a consumer wearable device to monitor activity among people with MS in a real-world setting. In it, 248 PatientsLikeMe members were provided with Fitbit One™ activity trackers. Of those who received them, 213 (82%) activated the device with the Fitbit website and authorized PatientsLikeMe to access their data. Two-hundred and three of those who authorized sharing of the data synchronized the device with the service and produced tracking data. Participants synced an average 18.21 days of data over the 21-day study (87% adherence).

Paul Wicks, PhD, Vice President of Innovation at PatientsLikeMe, said that advances in wearable health technology have the potential to shed light on disease characteristics. “PatientsLikeMe is in a unique position to combine self-reported data with objective measurement and help patients and researchers learn more to impact self discovery and research.”

The three-week study had a lasting impact on its participants, who together took a total of 15 million steps and walked 6,820 miles, the distance from Boston to Beijing. “I got positive reinforcement to do more each day, and that really encouraged me,” said Annette Smiling, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

After the study period, participants were surveyed to learn more about their study experiences and about their attitudes toward technology and physical activity tracking. Of the 191 participants who responded to the post-study survey, 88 percent reported the device was easy to use and incorporate into their daily routine; 83 percent agreed that they would continue to use the device after the study; and 68 percent believed that the device would be useful to them in managing their MS. Additional survey data is available at http://news.patientslikeme.com.

With more than 38,000 members, PatientsLikeMe’s MS community is the largest and most active MS research community online.

Study Design Methodology
A total of 248 PatientsLikeMe members living with MS were recruited to participate in a study deploying Fitbit One™ activity trackers. Information on patient demographics and level of self-reported functional disability were captured from the participants’ PatientsLikeMe profiles. Devices were mailed to participants with instructions on activation and authorization of data sharing between the manufacturer and PatientsLikeMe. As part of PatientsLikeMe’s member engagement framework, a live concierge service was available to participants to provide answers to technical and other questions. The study also took full advantage of the PatientsLikeMe platform and health tracking tools to engage participants with their data, and with each other. Study participants were able to track their physical activity levels on the PatientsLikeMe website and connect with each other in the MS discussion forum to talk about changing symptoms, benefits and issues. Data were collected for a period of three weeks, and patients were asked to complete a survey to provide feedback on their experiences with the device.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

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


Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Posted April 13th, 2015 by

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why.

What is this partnership designed to do?

Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines.

Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live the lives they want. It’s exciting to see how Briggs Morrison (Executive Vice President, Global Medicines Development, AstraZeneca) and his team have truly committed themselves to transforming the discovery and development process by focusing on what patients experience, and need.

How does this collaboration actually help patients?

Bruce Cooper: We have significant potential to accelerate an upgrade to the system by making the patient voice part of the DNA of life science processes, helping to generate evidence to support our R&D and drive our science. We want to better understand what is important to patients about all aspects of their condition and treatment, and then shape the profile of the medicines we discover and develop. And we want to empower patients to thrive to the fullest degree from this upgrade in how data is generated and shared.

Ed Godber: We’re really aligned on that point. PatientsLikeMe was founded more than ten years ago with a mission to put patients first, and to make their voice central to medical advances. We did that by enabling patients to learn from the experience of thousands of others like them, sharing important and varied information about their health in a way that is compatible with healthcare and research. We’ve already seen that this kind of sharing can improve patient outcomes and transform healthcare. So it’s important that we take “patientomics” to the next level. With AstraZeneca, we not only expand the network and data, but also develop the science and processes by which healthcare and discovery can be increasingly responsive to patient needs.

What’s the first thing you’ll focus on as you begin to work together?

Ed Godber: We have been able to quickly get into a rhythm of sharing innovation and best practice around how to integrate the patient voice into AstraZeneca’s R&D. From here, in the short term, we’ll work together to create a “how to” guide to incorporate patient centricity into the design and execution of our studies. The agreement is for five years, so we’ll continue to define and evolve what we focus on.

Bruce Cooper: I’m pleased to say too that we have begun to collaborate with clinical operations to integrate patient insights into trial design and execution. We also expect our medical strategies to be enhanced across our Therapy Areas. There are a number of areas that can benefit from the data that PatientsLikeMe generates, and I’m looking forward to exploring even more.

What does the future look like with this partnership in place?

Bruce Cooper: I see a world where patients are even more engaged in research, because they have greater access to it, and can shape the way we conduct research with them. I also see patients helping to shape the healthcare environment as a whole by bringing what’s important to them onto the government’s healthcare agenda, and even shaping the way healthcare is delivered in clinical practice in disease communities.

Ed Godber: We believe this can have a significant impact on the speed at which patients get the full value out of new and effective medicines in the real world, using all of the useful data about a patient’s experience at the right times in disease research, drug development, regulation, access and care.

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PatientsLikeMe and AstraZeneca announce global research collaboration

Posted April 13th, 2015 by

          

Five-year agreement focused on improving health outcomes for patients across main therapy areas

CAMBRIDGE, MA, April 13, 2015—In a major step forward to make patient-centric evidence a cornerstone of scientific discovery and development, PatientsLikeMe and AstraZeneca (NYSE: AZN) have signed a five-year agreement to provide access to PatientsLikeMe’s global network in support of AstraZeneca’s patient-driven research initiatives.

AstraZeneca will use patient-reported data from PatientsLikeMe to shape future medicine development and help improve outcomes across its main therapeutic areas, with an initial focus on respiratory disease, lupus, diabetes and oncology.

“Understanding what patients are experiencing every day and how they define the value of their treatments are fundamental to our ability to push the boundaries of science in developing the next-generation of medicines,” said Briggs Morrison, EVP Global Medicines Development, AstraZeneca. “Our partnership with PatientsLikeMe will help us to harness the important perspectives of patients through their advanced technology and real-world, real-time evidence to support our research and development programs.”

The agreement is the latest to embrace PatientsLikeMe’s global network, which delivers a unique depth and breadth of data about the patient. Ed Godber, Executive Vice President of Life Sciences Ventures, said the wide-ranging collaboration with AstraZeneca also marks a significant step in realizing PatientsLikeMe’s mission to make patients true partners in science.

“It’s rare to find a partner so committed to listening to and integrating the patient voice into the heart of its scientific development and operations. We’re excited to work together to transform the discovery and healthcare model and develop products and services tailored to what patients experience and truly need,” Godber said.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About AstraZeneca
AstraZeneca is a global, innovation-driven biopharmaceutical business that focuses on the discovery, development and commercialisation of prescription medicines, primarily for the treatment of cardiovascular, metabolic, respiratory, inflammation, autoimmune, oncology, infection and neuroscience diseases. AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide. For more information please visit: astrazeneca.com.

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


Recognizing the signs of IBS

Posted April 10th, 2015 by

Did you know that between 25 and 45 million people in the United States have IBS, but that many do not seek medical care for their symptoms?1 Are you one of them? Improved knowledge about IBS could lead to better treatments and care, and that’s why the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has designated April as IBS Awareness Month. Watch the IFFGD’s public service announcement about IBS below:

There are many ways to get involved in spreading awareness for IBS:

Over 4,300 PatientsLikeMe members are living with IBS – share your story with the community and help others live better, together.

 

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1 http://www.aboutibs.org/site/what-is-ibs/facts/


Seeing [MS]: The invisible symptoms – balance

Posted April 8th, 2015 by

Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak about her MS below:

You are now seeing balance

Photographed by Andreas Smetana
Inspired by Carol Cooke’s invisible symptoms

To help others understand this, she worked with photographer Andreas Smetana to portray her MS symptom in the picture above. Her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Posted April 6th, 2015 by

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact?

It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare.

For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too.

The Schwartz Center is calling for nominations for its National Compassionate Caregiver of the Year (NCCY) award, and you have until May 1 to submit your nomination.

Award-winning author Atul Gawande will present the award at the Kenneth B. Schwartz Compassionate Healthcare Dinner in November, which coincides with the Schwartz Center’s 20thanniversary. His work focuses on the difficult choices caregivers, patients and families face every day and the issues that can make it hard to provide high-quality, cost-effective and compassionate healthcare.

Do something special
If you have special healthcare providers in your life, honor them for their excellence by nominating them for National Compassionate Caregiver of the Year. It’s a simple but powerful way to show your appreciation for a job well (and compassionately) done.

“Receiving the Schwartz Center award … affirmed that rewarding feeling at the end of an encounter with a patient, when you see hope and relief in their eyes – it’s priceless,”  said Thea James, MD, last year’s Schwartz Center Compassionate Caregiver Award recipient.

More about the partnership
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the new alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Working together, we’ll survey our members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, designed to let healthcare organizations measure and reward the compassionate care that doctors, nurses and other caregivers provide to patients and families. Jointly, we’ll create content to teach patients what compassionate care really is and how to ask for it.

Julie Rosen, executive director of the Schwartz Center, commented on the part PatientsLikeMe will play in evaluating compassionate care:

“As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

Share this post on Twitter and nominate your candidate for Caregiver of the Year.


You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Posted April 1st, 2015 by

Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at the Partnership to Improve Patient Care (PIPC). She followed that up with a post on PIPC’s blog and we wanted share what she had to say. Check it out below.

“My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed.

At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent.

Eventually, I began doing my own research about my medical care and joined an online resource for patients called PatientsLikeMe. I learned that there were other options available, such as a 72 hour EEG that could detect what type of seizures I was having. My involvement with PatientsLikeMe eventually led me to find out about an epileptologist – a doctor specializing in epileptic care. My epileptologist performed tests that led him to accurately diagnose the type of seizures I was having. From there, I learned that I was a candidate for epilepsysurgery that I hadn’t heard about since I was about 10-years-old. . Prior to surgery, I asked many questions and went through a series of tests to make sure that surgery was the right procedure for me. And since my surgery in August 2012, I have been seizure free and I feel better than ever.

My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social spport, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.

Throughout my journey to find a solution for epilepsy, I developed my own passion – helping patients know that they do have a voice when it comes to medical decisions. I serve as a patient research advisor with 13 other patients for PatientsLikeMe. This expereince has allowed me to continue my passion in an environment that prioritizes patient-centeredness and patient empowerment. And the results speak for themselves. When patients are engaged in the decision-making process regarding their care, they experience better health outcomes and lower costs, while also developing trust in their providers.

Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.”

Visit the PIPC’s website to learn more about patient-centeredness and comparitive effectiveness research.