Painsomnia | MyHealthTeams

By Eric Peacock, cofounder and CEO of MyHealthTeams

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Painsomnia: When pain causes insomnia

“It’s like sleeping on rough-edged rocks. My body is trying to kill me from the inside out. Night after night.”

Every morning we see post after post just like this one, made by thousands of people facing chronic diseases, who have joined one of our 29 different patient social networks. It’s an epidemic that doesn’t get as much attention as it should. When we take a closer look at conditions such as lupus, endometriosis, rheumatoid arthritis, spondyloarthritis, migraine, psoriasis, Parkinson’s, hemophilia and fibromyalgia, the inability to sleep is a top symptom impacting quality of life — with 45% to 85% of members dealing with insomnia and a majority citing pain as the primary reason for the inability to sleep. “Painsomnia” they call it.

The National Sleep Foundation estimates that chronic pain disturbs the slumber of one in five Americans at least a few nights each week. Bad enough on the surface, the insidious thing about painsomnia is the undertow-effect. People are pulled under by the compounding impact of sleep deprivation. Depression. Cognitive dysfunction. Worsening of other physical symptoms. Inability to complete necessary tasks at home and work. Strain on relationships. The vicious cycle repeats and intensifies.

Painsomnia is one of the most talked-about topics in peer-to-peer conversations within condition-specific social networks. People are struggling, and they’re seeking support from others who get it.

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Overlooked Problem, Underestimated Impact
In research we completed in partnership with Bioverativ among members of MyHemophiliaTeam, people reported they are equally concerned about the depression they experience daily (65%) as they are about controlling bleeds. Digging into this a bit deeper, we found that 57% deal with pain so severe they find it hard to move comfortably and 71% say they can’t even escape the pain in their sleep. These issues are clearly linked, but healthcare providers and pharma companies too often overlook or underestimate the undertow effect of unchecked pain. In our study, 76% of respondents did not feel their pain is adequately addressed as part of their current treatment. That’s a problem as well as an opportunity.

There’s a real opportunity for biopharma companies to address unmet needs like this. The first order of business is to understand the real-world patient experience by exploring the symptoms that most impact quality of life. So many times, we see that the priorities of people living with a disease differ from the priorities of KOLs or the people working to treat it. The understanding that comes from an initiative such as our hemophilia study can help guide the approach providers and pharma co’s take to address unmet patient needs and better fight the undertow of an issue such as painsomnia.

The Innovation Imperative
Tackling painsomnia is no small undertaking, of course. And the previously accepted practice of throwing more pain pills at the problem is clearly not the answer. The opioid addiction epidemic in the U.S. is staggering — with more than 115 Americans dying every day from opioid overdose. There are lots of individuals and groups working to stem this tide. That’s a good thing.

But it’s not enough. In parallel, we need to create positive alternatives. The reality is that 1 in 2 Americans now lives with a chronic disease, and the numbers are only increasing. Severe pain — pain so bad you can’t sleep — is common among people living with a wide variety of chronic diseases. That’s not something we can ignore. As an industry, we must actively work to develop better pain management therapies and protocols, as well as fight the underlying causes of that pain — be they physical or mental, structural or inflammatory. We need to ensure patients feel heard — by actually listening to them.  And we need to aggressively educate and empower patients with the tools to tackle painsomnia and avoid its dangerous undertow.

 

Patient Education | MyHealthTeams

By Eric Peacock, cofounder and CEO of MyHealthTeams

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Patient Education — with patients teaching us what’s most important
From research to activation in MS

The highlight of my summer was a European speaking tour making stops to talk with the leadership teams at six different pharmaceutical companies and at Cannes Lions on the Healthcare Insights stage. I give a talk called “Unfiltered Truth: 10 Lessons Learned in Patient Social Networking” sharing real case studies where simply listening to patients in as unfiltered a way as possible, leads to massive opportunities for patient education.

The case study that consistently resonated with European audiences is the story of the “MS & Cognition” Resource Center we launched on MyMSTeam in partnership with Biogen. Our work together started with social listening that identified cognitive problems such as “brain fog,” “difficulty finding the words to say,” and “forgetting my best friend’s name” as a top-five symptom impacting quality of life. We decided to dig deeper with an 830-patient quantitative survey that validated that, in fact, 52% of MyMSTeam members suffer from cognition issues. But we were surprised to find that 49% of those people actually started experiencing these cognitive problems before they were diagnosed with MS.

This is astounding. And it debunks some of the conventional wisdom saying cognitive problems typically arise after diagnosis with MS. The reality is that many people (and their primary care physicians) were chalking up issues such as memory loss, difficulty multitasking and trouble concentrating to a wide range of other possible causes, from lack of sleep, to age, to menopause and not getting referred to a neurologist for an MS diagnosis. And even those who had been diagnosed with MS weren’t necessarily aware of the link between cognition, brain health and MS because their neurologists weren’t talking to them about it. This is a patient education gap if ever there was one.

Once we identified this gap in knowledge, we knew we needed to do something about it. So we worked closely with Biogen to create an unbranded, cognition resource center, an innovative patient education program designed to help people understand how MS impacts cognitive functioning. The center shows the the signs to look for, provides practical tips for managing cognitive challenges, and offers guidance for discussing brain health with your neurologist.

The response in the first two months has been overwhelming. Tens of thousands of diagnosed MS patients have come to the resource center, with thousands downloading doctor discussion guides and content to help them manage daily cognition challenges and initiate discussions with MS experts about brain health. Our members have underscored how valuable this information is to them as well as how much they appreciate feeling heard by a biopharma company.

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What most executives find compelling about this story is that it ends in action.  This is a research-to-activation story where real patients, on a patient social network, revealed an education gap that Biogen and we quickly filled with actionable patient education. It shows how patient social networks can be a powerful two-way communications channel for going direct to patients (in this case in an unbranded way). It led to them generating dozens of new ideas of things they could try in their businesses.

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Now we’re bringing this tour to the U.S., sharing an updated “10 Lessons Learned” and adding examples of educating and engaging patients with branded DTC content as well. We’re hoping to inspire and be inspired by U.S. biopharma execs interested in implementing this research-to-activation model in any of the 29 conditions we currently serve – as well as in new conditions we’re exploring.  If you’d like us to speak at your company, please reach out to start the discussion.

MyHealthTeams Launches Social Network MySpondylitisTeam

Working with UCB on patient education initiative
designed to empower people living with spondyloarthritis

 

San Francisco — January 18, 2018 — MyHealthTeams has launched MySpondylitisTeam, the social network for people living with spondyloarthritis (SpA), which is an umbrella term for chronic and inflammatory arthritis that affects the spine, the pelvis, the joints and the entheses (the sites where the ligaments and tendons attach to the bones), causing joint stiffness and crippling pain. The National Institutes of Health (NIH) estimates that more than 1% of Americans are living with spondyloarthritis, with most people first experiencing symptoms in their 20s or 30s – yet many are not diagnosed until several years later.

The new social network, which has attracted more than 3,800 registered members in just a few weeks, is a member-led online community in which people share information, resources, tips and advice that help them better manage their day-to-day health and lives. MyHealthTeams also creates and curates resources to serve the community. MySpondylitisTeam is one of 28 social networks established by MyHealthTeams since the company was founded in 2012.

“When someone is diagnosed with spondyloarthritis, especially after enduring years of inexplicable pain, they have a deep desire for more information and authentic connection,” said Eric Peacock, cofounder and CEO of MyHealthTeams. “Your Facebook friends may not know the first thing about spondyloarthritis, but on a social network exclusively for people who share the condition you know that everyone ‘gets it.’”

To increase awareness about spondyloarthritis, inflammatory back pain, and related symptoms, MyHealthTeams is working with UCB, a global biopharmaceutical company, on an educational initiative designed to provide people experiencing symptoms with information and resources.

“Understanding the patient experience is central to our operating ethos. UCB is focused on bringing solutions to people living with severe diseases, like spondyloarthritis. These patients need solutions that extend beyond just medications to include new technology and networks, a supportive community, and access to information. Teaming with MyHealthTeams allows UCB to gain insights from a unique social network just for patients, enabling us to provide valuable resources that educate and support SpA patients,” said Emmanuel Caeymaex, Head of Immunology and Executive Vice President, Immunology Patient Value Unit, UCB.

 

About Spondyloarthritis

Spondyloarthritis is a family of immune-mediated inflammatory diseases impacting joints and spine, which are chronic, painful and progressively debilitating conditions, where ongoing inflammation and disease progression leave patients with reduced mobility and functionality, as well as joint stiffness and crippling pain in affected areas.

Recent data suggest that the prevalence as well as the patient disease impact is similar to that of rheumatoid arthritis.

 

About MyHealthTeams

MyHealthTeams believes that if you are diagnosed with a chronic condition, it should be easy to find and connect with others like you.  MyHealthTeams creates social networks for people living with a chronic health condition.   More than 1.2 million people have joined one of the company’s 28 highly engaged communities focusing on the following conditions: Crohn’s and colitis, multiple sclerosis, lupus, fibromyalgia, pulmonary hypertension, spondylitis, eczema, hyperhydrosis, rheumatoid arthritis, psoriasis, irritable bowel syndrome, Parkinson’s, Alzheimer’s, epilepsy, hemophilia, depression, heart disease, type 2 diabetes, COPD, chronic pain, migraines, food allergies, obesity, HIV, PCOS, endometriosis, breast cancer and autism.  MyHealthTeams social networks are available in eight countries.

About UCB

UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 7,500 people in approximately 40 countries, the company generated revenue of €4.2 billion in 2016. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCB_news

 

 

Media Contact
Michelle Cox
press@myhealthteams.com
415-823-7574

Designing outcomes that matter to patients

CenterWatch Monthly - Aug 2017

If you are interested in engaging with over 1 million members from MyHealthTeams’ social networks, contact us.

One Million People Living With Chronic Conditions Now Rely On MyHealthTeams

Qiming U.S. Healthcare Fund leads $7.3 million Series C financing in the company

 

San Francisco — June 12, 2017 — MyHealthTeams has closed its Series C financing round, which will accelerate the company’s leadership in patient engagement among those living with chronic conditions. The company now serves 1 million registered members who rely on its 24 social networks for connection, information and support in managing their day-to-day health.

Qiming U.S. Healthcare Fund, part of Qiming Venture Funds, led the $7.3 million round. This is the second investment from the $100 million fund the firm raised earlier this year to back U.S. healthcare companies with potential market opportunities in China. Mark McDade, managing partner at Qiming U.S., and former Chief Operating Officer of pharmaceutical company UCB, is joining the MyHealthTeams board of directors.

“As the pharmaceutical industry is increasingly focused on patient-reported outcomes, it’s essential to understand the real world evidence of therapies from the early phases of development through commercial availability,” said McDade. “MyHealthTeams has created highly engaged communities, unlike any we’ve seen before, for people living with chronic disease. The result is an unmatched global opportunity for pharma partners to engage the right patients with the right content, ultimately leading to better outcomes.”

Founded in 2012, MyHealthTeams launches social networks such as MyLupusTeam, MyDepressionTeam and MyParkinsonsTeam that provide a safe place for patients to connect and learn from each other. The company’s 24 social networks address 90% of the chronic condition population, serving people living with autoimmune disorders, neurological diseases, rare conditions, common conditions, reproductive health issues and more. Each community-driven social network helps individuals and families connect with others who are dealing with the same specific condition, empowering them to share information, experiences, resources and life hacks that help them effectively manage their health and lives.

“Doctors can provide critical medical advice and prescriptions, but when it comes to navigating day-to-day life with a chronic condition, nothing beats the advice of other patients and caregivers,” said Eric Peacock, co-founder and CEO of MyHealthTeams.  “This direct peer-to-peer model has a profound benefit on long-term quality of life and presents a valuable patient-first opportunity to improve the way treatments are developed, introduced and adopted.”

This Series C brings MyHealthTeams’ total funding to $17.4 million, and Qiming U.S. joins an investor syndicate that includes Adams Street Partners, CVS Health, The Westly Group, HealthTech Capital and 500 Startups.

 

About MyHealthTeams

MyHealthTeams believes that if you are diagnosed with a chronic condition, it should be easy to find and connect with others like you.  MyHealthTeams creates social networks for people living with a chronic health condition.   More than one million people have joined one of the company’s 24 highly engaged communities focusing on the following conditions: Crohn’s and colitis, multiple sclerosis, lupus, fibromyalgia, breast cancer, rheumatoid arthritis, psoriasis, irritable bowel syndrome, Parkinson’s, Alzheimer’s, epilepsy, hemophilia, depression, heart disease, type 2 diabetes, COPD, chronic pain, migraines, food allergies, obesity, HIV, PCOS, endometriosis and autism.  MyHealthTeams social networks are available in eight countries.

 

About Qiming U.S. Healthcare Fund

The Qiming U.S. Healthcare Fund, LP is a new US healthcare venture fund headquartered in Seattle, WA with offices in Palo Alto, CA and Cambridge, MA. As part of a broader family of Qiming venture funds, this new fund seeks to invest in US-based human healthcare companies with potential market opportunities in China.  Focused areas of interest are bio-therapeutics, medtech and digital health technologies, with equity investments ranging from $5 to $12 million.

 

 

Media Contact

Michelle Cox

press@myhealthteams.com

415-823-7574

MyMigraineTeam Now Open: 23rd Social Network By MyHealthTeams

MyHealthTeams has launched its 23rd social network: MyMigraineTeam.com, the social network for people living with migraines. 38 million Americans live with migraines, according to the Migraine Research Foundation. It is the third most prevalent condition in the world and more than 90% of sufferers are unable to work or function normally during their migraine.

 

MyMigraineTeam.com is the online support group and social network for those living with migraines. Members can join and immediately meet people like them who can empathize and understand life with migraines. MyMigraineTeam members can ask and answer questions, find local providers, discuss treatments, and meet others by searching by symptom, treatment, or city. Each day members share their ups and downs in a supportive online community.

 

MyHealthTeams creates social network apps for people with chronic conditions. MyMigraineTeam is the 23rd network and joins others like MyFibroTeam (113,000 members), MyMSTeam (65,000 members), MyCrohnsAndColitisTeam.com (48,000 members), MyEpilepsyTeam (29,000 members), and MyParkinsonsTeam (20,000 members). View MyHealthTeams’ latest social network apps here.

 

If you live with migraines, sign-up to meet and learn from others like you: MyMigraineTeam.com

New Social Network for HIV Launches

MyHealthTeams has launched its 22nd social network: myHIVteam.com, the social network for people living with HIV. HIV is a chronic, lifelong condition. People with HIV often have a compromised immune system, making them prone to other conditions and complications. Stigma also remains a burden for many HIV-positive people. 36.7 million people globally live with HIV. In the U.S. 1.2 million live with HIV, although the annual number of new HIV diagnoses has declined 19% over the past 10 years.

myHIVteam is the online support group and social network for those living with HIV. Members can join and immediately meet people like them who can empathize and understand what they go through, both physically and emotionally. myHIVteam members can ask and answer questions, find local providers, discuss treatments, and meet others by searching by symptom, treatment, or city. Each day members share their ups and downs in a supportive online community.

 MyHealthTeams creates social network apps for people with chronic conditions. myHIVteam is the 22nd network and joins others like MyFibroTeam (113,000 members), MyMSTeam (65,000 members), MyCrohnsAndColitisTeam.com (48,000 members), MyEpilepsyTeam (29,000 members), and MyParkinsonsTeam (20,000 members). View MyHealthTeams’ latest social network apps here.

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If you live with HIV, sign-up to meet and learn from others like you: myHIVteam.com

Vote For Our SxSW Panels

MyHealthTeams wants to bring support for people with chronic conditions to SxSW! You vote will help get us there.

How do life hacks keep people out of the ER and improve health outcomes? How are patient communities helping to lower healthcare costs and improve health outcomes?

133 million Americans are diagnosed with a chronic condition and find themselves navigating treatment, pain, side effects and the health care system. Life with a chronic condition can become very overwhelming very quickly. There is a huge opportunity to improve health outcomes and ultimately reduce healthcare costs when the wisdom of the crowd comes to light. Learn more about the benefits gained for society when lifehacks and the experience of others are crowdsourced to ease the challenges of living with a disease.

Our panels:

 

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How Patient Channels Lower Costs & Improve Health. Vote here: http://panelpicker.sxsw.com/vote/62622

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Using Lifehacks to Stay Out of the ER. Vote here: http://panelpicker.sxsw.com/vote/60423

 

How to vote: Click the thumbs up on each page. You will have to register.
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Vote for our proposed SXSW panels by September 2, 2016!​

 

MyHealthTeams Raises $5MM in Series B Financing to Rapidly Expand Its Health Social Networks

MyHealthTeams, the San Francisco startup behind thirteen of the fastest-growing social networks in chronic health, announced today that it has closed its series B financing raising just over $5MM.  The round was led by a strategic investment from CVS Health and also included support from previous investors including Adams Street Partners, the Westly Group, HealthTechCapital and Sand Hill Angels. This Series B brings the total capital raised by the company to $10.14MM.

“In the past 18 months MyHealthTeams has tripled our user base, expanded to serve 13 different chronic-disease communities across 8 countries, and proven you can build a great business while doing something that helps people,” said Eric Peacock, CEO of MyHealthTeams.  “With this financing, we are well-positioned to rapidly expand beyond our initial 13 social networks and reach a much greater audience of people facing each of those conditions.”

MyHealthTeams, co-founded by Eric Peacock and Mary Ray, recently launched social networks in Diabetes and Parkinson’s disease, and plans to launch new networks for both the hemophilia and Alzheimer’s communities this year.

About MyHealthTeams

MyHealthTeams is a San Francisco-based company that creates social networks for chronic condition communities. Through its 13 social network for over 300,000 members in 8 countries, MyHealthTeams makes it easy for those living with a chronic condition to connect with others who share their diagnoses, treatment paths, symptoms and more.  Find more information about MyHealthTeams and its growing number of social networks at www.MyHealthTeams.com.

How does a clinical trial work?

“I’ve heard clinical trials can provide alternative treatment options and help benefit advancements in medicine, but what exactly is clinical research and how does it work?”

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These are questions we hear often as there can be many misconceptions about clinical trials and how they work. Part of CenterWatch’s mission is to help educate patients about clinical research to make a more informed decision about participation. So what are clinical trials and how do they work?

Clinical trials are conducted by medical doctors, or physician investigators, to collect data regarding the safety and efficacy of new drug development for the treatment of all types of medical conditions. There are several steps and stages of approval in the clinical trials process before a new drug can be considered safe and effective for sale to the general public, if ever.

Typically, clinical trials are conducted in four phases with each phase treated as a separate trial. Healthy volunteers or patients are selected based on meeting a defined set of criteria. The factors that allow volunteers to participate in a clinical trial are called “inclusion criteria” and the factors that disallow volunteers from participating are called “exclusion criteria.” These criteria can include age, gender, the type and stage of a disease, previous treatment history and other medical conditions.

After each phase is completed and prior to moving on to the next phase, data is submitted to the Food and Drug Administration (FDA) for approval.

  • Phase I assesses the safety and effects of a drug including: how it is absorbed, metabolized or excreted. This initial testing phase can take several months to complete and usually includes a small number of healthy volunteers ranging from 20 to 100 people and they may be paid for their participation. About 70% of drugs pass this phase.
  • Phase II tests the efficacy, or effectiveness, of a drug and how well it works on patients. This phase can last from several months to two years, and involves up to several hundred patients. Most phase II studies are randomized trials where one group of patients receives the experimental drug, while a second “control” group receives a standard treatment or placebo. Often these studies are “blinded” so that neither the patients nor the researchers know who has received the experimental drug. This allows investigators to provide the pharmaceutical company and the FDA with comparative information about the relative safety and effectiveness of the new drug. About 30% of drugs pass both Phase I and Phase II studies.
  • Phase III involves randomized and blind testing in several hundred to several thousand patients. This large-scale testing, which can last several years, provides the pharmaceutical company and the FDA with a more thorough understanding of the effectiveness of the drug, the benefits and the range of possible adverse reactions. Between 70% and 90% of drugs successfully complete this phase. Once completed, the pharmaceutical company can request FDA approval to sell the drug to the public.
  • Phase IV studies are conducted after a drug has been approved for consumer sale. At this stage, pharmaceutical companies compare the drug with other drugs already in the market, monitor a drug’s long-term effectiveness and impact on a patient’s quality of life and determine the cost-effectiveness of a drug therapy relative to other traditional and new therapies.

“Where can I learn more about participating in a clinical trial?”

Participating in a clinical trial is a personal and even a family decision. Research studies are very involved so it is important to learn as much as possible about the study you may participate in before you consent. Consider speaking with your doctor first or another medical professional. You can also visit our website at www.centerwatch.com. We provide a list of questions to ask your doctor along with information on informed consent, what to expect during the trial process and what happens post-trial.

“Where can I find clinical trials?”

Today, many clinical trials are posted online and can be found through a simple search. CenterWatch lists thousands of clinical trials – you can search by medical condition such as diabetes or COPD, by therapeutic area such as oncology or dermatology or by your location. Each trial is written in patient-friendly language so you don’t need to be a researcher to understand the details. You’ll also find basic qualifying or disqualifying criteria, location details and contact information. If you find a trial you are interested in, contact the research center noted to start the process and see if you qualify, or call us at 866-219-3440 and we’ll help you navigate the site and answer any questions you have.

 

Ryan Hall is a patient project representative for CenterWatch, and is committed to providing patients and their advocates with important information on clinical trials, FDA drug approvals and other essential health and educational resources.

If you’re interested in more information about clinical trial participation, visit our Patient Resource Center at: www.centerwatch.com/health-resources/.

If you have any additional questions about clinical trial participation, email customerservice@centerwatch.com, call toll-free at 866-219-3440 or visit us at www.centerwatch.com