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With consumers feeling the pinch of healthcare costs more intensely than ever, the debate over cost transparency is only getting more heated. Nobody is feeling that heat more than pharma.

Prescription drugs are an ever-increasing share of our out-of-pocket medical costs. And by all accounts, it’s going to get worse.

The CMS Office of the Actuary estimates that prescription drug spending is going to grow faster than all other major sectors of health care, averaging 6.3 percent for 2017-2026. That’s all the more concerning when you consider that one-third of Americans report that they were either unable to fill a prescription due to cost, or took less of it to save money.  

The price transparency debate came to a head in May, when the U.S. Department of Health and Human Services (HHS) Secretary Alex Azar announced that drug companies will now be required to include the price of prescription drugs in their TV ads. The rule applies only to drugs that cost more than $35 per month.

The assumption behind this new requirement is that consumers will make different choices if they know in advance what their out-of-pocket costs are likely to be – and if other, lower-cost options are available.

Because price transparency is of great concern to patient advocates, we recently conducted some quick-strike research to see what Patient Leaders in the WEGO Health network think of the new HHS rule. We asked five questions and received 550 responses from Patient Leaders across a broad range of chronic and complex conditions. Here’s what we learned:

First, nearly seven in ten Patient Leaders say that pharma companies are “not at all” transparent about the out-of-pocket costs of their drugs. That could explain why there is more of an appetite among policymakers in Washington and in the states to mandate some degree of transparency.

Second, we wanted to know how important transparency is to the average consumer. Here, too, Patient Leaders did not equivocate. More than 95 percent said it is either “somewhat” or “extremely” important, with the vast majority falling into the latter group. This helps explain why patient advocacy organizations were pushing for the new federal rule.

Third, the vast majority of Patient Leaders believe that greater transparency will encourage patients to be more proactive in seeking out less expensive therapies – or find other ways to reduce out-of-pocket costs, such as use of co-pay card.

Advocates of price transparency say this is a key goal. There’s plenty of research that shows that consumers armed with better information regarding quality and cost enables them to seek out better value.

Our fourth question reinforced this point, as did the response. Eight in ten Patient Leaders say the new HHS rule will help consumers make choices that minimize their out-of-pocket costs for prescription drugs.

Lastly, we asked Patient Leaders whether they were familiar with the new HHS rule mandating disclosure of drug costs. We found that only about one-third of the respondents were. While we don’t know how that compares to the broader public, it suggests that news about the law and its potential impact has been slow to reach the patient community itself.

With 23.3 cents of every health care dollar spent on prescription drugs, there’s every reason to believe more people will start clamoring for increased transparency. Whether pharma will see it as a threat or an opportunity remains to be seen. But one thing is for sure: this issue is not going away. The sooner pharma marketers get out in front of it, the better.

The post WEGO Health Survey: Patient Leaders are Solidly Behind Drug Price Transparency appeared first on WEGO Health.

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Originally coined the “WEGO Health Activist Awards,” the WEGO Health Awards were created to embody the mission of WEGO Health: To empower Patient Leaders. We connect with countless patient advocates, influencers, and healthcare collaborators who are helping others and transforming healthcare – often without any formal recognition.

Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to connect the healthcare industry with top patient influencers. The WEGO Health Awards offer a way to introduce new Patient Leaders to the online community and to allow network members the opportunity to recognize and say “thank you” to the leaders they look up to.

Considering the WEGO Health Patient Leader Network is centered around these healthcare transformers, we knew it was up to us to celebrate their accomplishments. From this need to celebrate the Leaders who make a difference, the WEGO Health Awards were born.

The WEGO Health Awards can be broken into the following phases:

June 3rd – June 30th

The nomination period is currently open! We want to make sure all the Patient Leaders out there get recognized, so nominations will remain open until June 30th. 

Please note there are no endorsements during the initial nominations period (June 3rd-June 30th). Instead, feel free to retweet your nomination and share your achievement with your readers/followers. This will encourage your audience to visit the WEGO Health Awards page and potentially nominate you for multiple categories or leave a testimony on your public Awards profile. By spreading the word about the WEGO Health Awards program, we can build a better community for our members. The stronger the online health community, the stronger the patient’s voice!

Please note each nomination is manually reviewed and approved by our team to ensure the integrity of the program. Please allow 1-3 business days for the nomination to process. We will then contact the nominee to alert them of their nomination and invite them to create a WEGO Health Awards profile for our nominee directory. Not providing an email address for the nominee will delay the notification process.

Who should be nominated? Who can win a WEGO Health Award?
Anyone who is an active and leading member of an online community, and making a difference in healthcare, is eligible to be nominated. He or she should provide the community with valuable information and support to make a difference for other patients and caregivers. Nominees for an individual social channel award must have a presence on that particular social channel, of course.
Think about the advocates and influencers you see leading Facebook groups, blogging about their health journey, speaking up and giving insights to healthcare companies, presenting on national stages, and running Twitter chats. Patient Leaders have started non-profits, published podcast episodes, and authored books–there is no shortage of Patient Leaders’ contributions to the world, so let’s recognize as many of them as we can for their talents, contributions, and commitment.
How did you come up with the categories? Can I only use those to nominate someone?
The WEGO Health Awards were created based on Patient Leader feedback and the same is true of the categories we use. They might change a bit each year, but they’re created with you and your community in mind. We’ll only be selecting winners for the categories listed in our nomination form, but we’re always open to suggestions.
How do I nominate someone?
Go to our WEGO Health Awards nominations page to get started. Tell us who you want to recognize, where you follow them online, and the WEGO Health Award you think they should win. Once you’re finished nominating your favorite Patient Leader, feel free to share that nomination with your community or send a tweet with the hashtag #WEGOHealthAwards. And be sure to nominate early and often; we want to recognize as many Patient Leaders as possible.
Can I nominate myself?
Of course. We hope you’ll reach out to your community and ask them to nominate their favorite members of the online health world – and that includes you! However, you’re more than welcome to nominate yourself as part of the process. Be sure to take a moment and recognize any of the great leaders that help you on a daily basis as well.
How will I know if I am nominated?
Each nominee will be notified via email and social media (as applicable) and will be given the chance to complete a unique Nominee Profile with additional information about themselves and their advocacy.
Visitors will be able to see all of our nominees – and endorse them during the endorsements phase – in the WEGO Health Nominee Directory.

July 1st – July 28th

Endorsements are a way to give nominees a visual show of support. During this period, each nominee will receive an Endorsement badge to post on their blogs.

The three nominees in each WEGO Health Award category with the highest number of endorsements automatically become finalists. So make sure your readers/followers know to endorse you – tweet it, post it, email it, blog it- just get it out there (and make sure to tag us, nothing makes us happier than some social media love).

What is an endorsement?
An endorsement is a way to give nominees a visual show of support. The endorsement button is on each nominee’s profile and you can also see the number of endorsements that each nominee has received. The three nominees with the highest number of endorsements will automatically become part of the five finalists for that award category.
What happens when I endorse a nominee? Is it the same as voting?
Endorsements were created to give network members a chance to participate in the WEGO Health Awards. Think of it as a way to give a shout-out or virtual hug to your favorite Patient Leaders.
In response to feedback from the community, the endorsement process helps select top Patient Leaders to move on to the finalist round. The three most endorsed nominees in each WEGO Health Award category will automatically become a finalist. There are five finalists within each category and the final award winner is selected by our panel of distinguished judges.
So, if you are nominated for an award, make sure you ask your friends, family, and community members to take a moment to endorse your efforts.
Can I endorse more than one person?
While you can only endorse each person’s Nominee Profile once, you can endorse as many people as you like. If you want to spread the love and endorse others, feel free to do so.
Do likes/tweets count as endorsements?
While showing your support through Facebook likes or tweets is appreciated by the nominees, we will not be counting that form of social media support towards endorsements.
Can I still become a finalist if I do not get a high number of endorsements?
Yes. While the three nominees with the highest endorsement numbers in each category will automatically become finalists, the rest of the finalists will be determined by our judging panelists through numerous additional factors aside from endorsements. This occurs within the first round of our judging process.

August 5th- September 6th

We host multiple rounds of judging, after all, we receive thousands of nominations! The finalists are selected in one of two ways.

First, the top three endorsed nominees within a WEGO Health Award category automatically move on as finalists. The subsequent two finalists in each category are selected by our judging panelists. The judging panel is comprised of past award winners, foundations, organizations, award sponsors, and industry experts. Finalists will be selected based on their relevance to that particular award and the information provided in a nominee’s profile.

Once the top five finalists in each WEGO Health Award category have been selected, we’ll announce the finalists on our blog and then move into the second round of judging.

Top industry experts convene to review the five finalists in each category based on their use of social media, their fit for the award for which they’ve been nominated, and how effectively they engage their online community. Judges score individually, and then WEGO Health tallies these scores to identify the winners. No one knows the winners until we make the announcement at our annual WEGO Health Awards Online Ceremony.

Note: A nominee’s community size (number of fans, followers, readers, members, etc.) will not be considered. The nominee is judged based on their content and fit for the award category.

I want to be a judge for the WEGO Health Awards. How can I do that?
If you’re interested in participating, please email us at awards@wegohealth.com with the subject line ‘Be a Judge’ for additional details.
Can judges be nominees or WEGO Health Award winners?
We do allow those who were nominated to participate in the judging process. However, if a judge is nominated for a certain award, they are not allowed to judge that category. We also give the judge the option to either remove themselves from the running or give up their judge’s spot.
How do you pick your judges?
We have many Patient Leaders, patients, caregivers, industry leaders, previous winners, finalists and Patient Leader Network members who connect with us throughout the year. Many of them express interest in being involved with the WEGO Health Awards. The WEGO Health team compiles a list of those enthusiasts throughout the year and connects with each before our WEGO Health Awards season. We then chat about the details, time commitment, and what is expected of the judges. Once they confirm they would like to officially participate, they are in. WEGO Health also hires a Judging Ambassador to help us confirm and work with these judges.
How do you score the nominees? What criteria do judges use when selecting semi-finalists, finalists, and winners?
Judges score nominees on the following criteria:
• Fit for the Award | How well does this person fit the category they are nominated for? (i.e. if they are nominated for Rookie of the Year, have they only recently started their advocacy journey?)
• Use of Social Media | How well does this Patient Leader use social media for their activism? Are they active, engaged, and responsive on their networks? Are they a power user of social media and active on multiple profiles?
• Focus on sharing of information and overall engagement | How well does this Patient Leader balance sharing of their own content with the sharing of others’ content and information?

September – October

Our celebration will span two ceremonies allowing as many Patient Leaders as possible to take part!

We will host a virtual ceremony September 18th – 20th, 2019, during which we will announce the winners within each category. This ceremony will be held on the WEGO Health’s social channels. Announcements will be made on Facebook, with activities and chats occurring on both Twitter and Instagram.

Winners will be awarded an AMAZING WEGO Health prize pack valued at over $7,000.

Then in October, winners will be invited to an in-person celebration at the HLTH Conference October 27th – 30th, 2019, at the MGM Grand in Las Vegas.

This year we’re ecstatic to announce the WEGO Health Awards partnership with HLTH – the largest and most important conference for health innovation. Not only will our 2019 WEGO Health Award winners be honored during a presentation and reception at HLTH, but they will play an active role in contributing insights during the conference.

Prize Pack valued at $7,000

  • Airfare and accommodations to the HLTH Conference in Las Vegas, NV
  • WEGO Health Awards presentation & reception at the HLTH Conference
  • Personalized WEGO Health Awards plaque
  • Opportunity to share your patient expertise on patient panels, roundtables and Table Talks with other industry leaders at the HLTH Conference
  • Participate as social media ambassadors in the lead up to the conference and then live during the event
  • Position as compensated 2020 WEGO Health Patient Leader Advisory Board member

More questions? Please feel free to refer to the WEGO Health Awards FAQ Page.

The post How The WEGO Health Awards Work appeared first on WEGO Health.

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By Jack Barrette

Every company reinvents itself.

Sometimes it’s skin-deep, like rolling out a new logo or a bolder mission statement. Other times, it fundamentally changes how a company solves problems and achieves a social impact.

In the twelve years since I founded WEGO Health, the process of reinvention has never really stopped.

That’s not to say it has always been deliberate and predictable. On the contrary. The “great recession” of 2008 hit us like a freight train before we’d even reached our first anniversary. Like any early stage company, we’ve weathered our share of storms.

But today is different.

Today’s reinvention is as deliberate and planned as any we’ve undertaken. While I’m obviously biased, I genuinely believe it is the most exciting leap forward in our twelve-year history.

Here’s why:

First, we’re rolling out an industry-first solution that builds on our greatest strength – the trusted bond we have with over 100,000 Patient Leaders who are passionately committed to healthcare transformation.

Second, this is a solution we’ve had the opportunity to pressure-test with our partners, some of the world’s leading life sciences companies. We’ve seen how it works, why it works, and how to measure success.

Third, this is a solution that promises to transform the way healthcare companies collaborate with not just one, but thousands of patient opinion leaders and influencers, to drive patient awareness and activation at the speed of social.

Every aspect of our new solution is guided by the same commitment to patient-driven innovation that has propelled WEGO Health to where it is today. It has three key pillars:

The first is our new Discovery Lab, which consists of “always-on” digital tools to capture insights from patient leaders at scale.

The Discovery Lab facilitates everything from quick-strike research using our smartphone-enabled Truvio app, to immersive – yet virtual – Patient Leader summits using our new Patient Co-Lab. The Discovery Lab ensures that every initiative we take on with our partners is driven by the voice of the patient community.

The second pillar is our new Content Studio, which streamlines the creation of original, Patient Leader-driven content, such as short-form videos, social posts, interactive Q&A, and blogs.

Unlike traditional health media companies, we’re channeling and scaling content at the speed of social by tapping the expertise and passion of social media’s power builders in online communities.

The Content Studio ensures that patient-facing content is infused with authenticity, empathy and trust – three things every life sciences company needs to build a stronger connection with patients.

The third pillar is our Activation Engine, which combines our trusted brand, our proprietary influencer data, and best practices in social media promotion to activate patient communities at scale.

The Activation Engine takes patient-driven social media marketing to a whole new level. By leveraging the voice and reach of trusted patient influencers on platforms like Facebook, Instagram and Twitter, it serves as a massive, high-impact foundation for major life sciences DTC programs.

These three pillars work together as an integrated solution for campaigns that are both mass-scale and performance-guaranteed.

As Steve Jobs once memorably said, “We’re here to put a dent in the universe. Otherwise, why even be here?”

With this latest reinvention, our goal is to make that dent bigger than ever.

To learn more and request a case study demonstrating how this new offering has delivered results for our pharma partners, click here.

The post It’s Time to Make a Bigger Dent appeared first on WEGO Health.

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There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

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The 100,000+ patients who make up the WEGO Health Patient Leader Network are at the core of everything we do. We believe they are transforming healthcare for the better and it’s gratifying to see more and more life sciences companies recognizing the extraordinary value patients bring to the table. Working with highly engaged advocates and influencers allows us to glean insights that will ultimately help life sciences companies better connect with patient communities.

Social media is one way to do so. It offers companies a direct and ongoing means to communicate and share information with consumers.  So earlier this year we asked patient influencers to share more about how and why they are using social media. After surveying 412 influencers across hundreds of conditions, we both confirmed some data points we gathered in a previous Behavioral Intent Study and uncovered some new trends.

Some key findings:

  • Facebook is still on top. While nearly  4 in 10 patients (37%)  have changed their privacy settings in light of concerns over their personal data, only 3 in 100 have stopped using Facebook or deleted their account due to privacy concerns. Of those sticking with the platform, the data is unequivocal. Despite Facebook’s business practices, virtually all (98%) patient influencers continue to use Facebook and 9 in 10 say they use it daily. Other social media platforms are gaining ground, but Facebook remains the leader among patient influencers. This is likely due in part to the platform’s group functionality. A whopping 94% of influencers are members of a health-related Facebook group. Facebook is still where patients spend their time, making it essential for companies to engage patients on the platform.
  • Pharma is missing the mark. The primary value of social media is the ability to connect with other patients, but that’s not the only thing influencers are there for. They also access health information and find support by engaging with advocacy organizations and healthcare providers. In fact, 9 in 10 patient influencers follow an advocacy organization and nearly half follow a health care provider. While many pharma companies have a social media presence, only 1 in 5 influencers follow a pharma company, with slightly more following a brand if they are on that specific therapy. They might not be engaging directly, but patients are certainly using social to talk about pharma. Nearly 7 in 10 patient influencers have shared both positive and negative medication experiences. Social media remains a huge opportunity for pharma to engage their audiences and ultimately meet their marketing KPIs.

  • Social absolutely informs patient choices. Our 2016 Behavioral Intent Study found that 87% of patients will ask their physician about a medication if they learned about it from a trusted patient influencer. This year’s landscape survey confirmed that social media still plays a big role in real-world patient behavior. Nine in ten patient influencers say that online communities play at least a “somewhat important” role in their health decisions, with nearly half (48%) saying that online communities play a “very important” or “extremely important” role.

Check out the infographic below for a more detailed look at our findings and access the full 20-page report here.

The post Patient Influencer Perspectives on Social Media appeared first on WEGO Health.

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There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.
 
The Best in Show: Youtube category highlights the individuals and teams who’s videos are at the core of their advocacy. Whether they capture their day to day lives, offer how-to videos, highlight resources, or educate and raise awareness, they’re engaging followers through creative but informational content. As of 2019, 80% of global internet consumption is video.
 
So if you have yet to bring your advocacy to video, maybe you want to get inspired by these Top 10 Best in Show: Youtubers.

.


Check 15 

Cancer Patient Leader

Youtube | Facebook | TwitterInstagram

We create & release a new cancer awareness PSA every 15th of every month with the goal of fighting cancer through early detection & lowering risk – all delivered with a healthy dose of humor. CHECK 15 is a movement to help inform and break down barriers around the cancer conversation. Cancer Awareness Months are fantastic, but unfortunately, cancer is a year-round problem. So, here at CHECK 15, our goal is to create a Monthly Cancer Awareness Day. On the 15th day of every month, we’ll be hitting the internet with a reminder to not let the “C” word scare us. To be aware of our bodies and the warning signs of cancer and not be afraid to speak openly about it.Did you know Check 15 is the 2018 WEGO Health Awards Best in Show: Youtube winner?


Christina Doherty
Chronic Illness Patient Leader

Youtube | FacebookInstagram

“Hello everyone! I am a 22-year-old vlogger and artist fighting multiple chronic illnesses. When I first started to get ill I scoured the internet looking for others out there like me. I wanted someone I could connect with who was going through the same struggles that I was. I needed to see that there was someone out there who was LIVING with this. I wanted hope. Unfortunately, at the time, I came up empty-handed. So I decided, if I couldn’t find that person, then I was going to have to be that person; I owed it to my younger self. My desire is that through my videos people can learn a little, laugh a little, find kinship, community, inspiration, and most importantly, find HOPE.” Learn more about Christina.


Mickey Sorenson

EDS Patient Leader

Youtube | Instagram

My name is Mickey and I’m 17 years old. I have Ehlers Danlos Syndrome which is a connective tissue disorder. It affects many different parts of my body and causes other conditions such as Gastroparesis, POTS, Mast Cell Activation Syndrome, and more. With EDS and I dislocate more than 30 joints every single day. I need a forearm crutch or wheelchair for stability. Due to Gastroparesis, I have a GJ feeding tube. I also have a Port-a-Cath for Infusions to help with my POTS. After being sick for several years I decided to share my story online. I want to show others that there is joy to be found despite sickness. It is my goal to bring hope, joy, and encouragement to as many people as I can! Click to connect with Mickey.

Hannah Blum

Mental Health Patient Leader

Youtube |Facebook | Twitter

“I am a mental health advocate and influencer on mediated platforms. These platforms include the HealthyPlace YouTube Channel, Instagram, Twitter and FaceBook. I create videos about mental health and talk about my experience living with bipolar 2 disorder. My blog Halfway2Hannah talks about mental health, ways to become an advocate, stigma and shares my personal story as well as the story of others. I am the author of the HealthyPlace blog, “Im Bipolar Too.” I have an unfiltered approach and send a bold message about the stigma that silences so many individuals living with a mental illness. My mission is to empower individuals living with a mental illness and encourage self-love.” Learn more about Hannah.



Jim Murell

Transplant Patient Leader

Youtube | Facebook |Twitter| Instagram

“As a 2013 Heart Transplant recipient myself I’ve learned first hand how important donor awareness can be. My entire goal in life has become to give back in any way I can. 3 years ago to fulfill that goal I created “The Transplant Helper. This consisted of meeting face to face with pre and post-transplant patients to help “Advocate, Educate and Motivate” them in any way possible. This was the new joy of my life so after the persistence of many including my transplant center UAB hospital I decided to take their advice and start a YouTube channel to attempt to share the experiences and knowledge I’ve learned first hand. Over time I’ve amassed over 200 videos to fulfill my goal.” Learn more about Jim and his advocacy journey.

Maggie Baldwin

IBD Patient Leader

Youtube | Facebook |Instagram

My name is Maggie Baldwin, and I have a YouTube channel that focuses on supporting those with Inflammatory Bowel Disease and ostomy bags. Through my journey with my disease, I have become a registered nurse working on a GI unit with IBD patients. I feel fortunate enough to use my experiences to better the lives of those with this disease through my YouTube channel, Let’s Talk IBD and my job as a nurse. Connect with Maggie.


Emily Parris

Chronic Illness Patient Leader

Youtube | Facebook | Twitter | Instagram

“After coming home from my emergency total colectomy I was left scared, overwhelmed and every emotion you could imagine. I was lost. Luckily, I had an amazing support system. My mind then turned to the patients who don’t. I then felt compelled to offer support to patients whose families and friends don’t understand, can’t support them or just need additional help. While The Rollin Colon was motivated by my ostomy surgery, I hope to impact any chronic illness patient feeling those same emotions I did. My Youtube channel first started as beauty and fashion, but when my life changed so did my platform. I now share videos raising awareness and offering advice on living with chronic illnesses. Learn more about the Rollin Colon.

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HealtheVoices, what an event?! This past weekend, Janssen presented its 5th annual HealtheVoices conference and it did not disappoint. Bringing together 140 top Patient Leaders, across condition areas, it was a weekend full of excitement, learning, and friendship.

From learning how to infuse humor into your advocacy to writing memoirs to mastering your Twitter engagement – the weekend was jam-packed full of informative sessions.

And the amazing sessions just keep getting more exciting! When Love & Gratitude isn’t Enough – Earning from Patient Leadership. Thank you @wegohealth for empowering patient leaders to monetize their advocacy meaningfully. #HealtheVoices19 #HealtheVoicesLive pic.twitter.com/Q2ZHY8oftS

— Kamaria Laffrey (@mrs_kam) April 13, 2019

WEGO Health, along with Rick Davis, Jackie Zimmerman, and Dakota Rosenfelt, presented a session titled “When Love and Gratitude Isn’t Enough – Earning From Patient Leadership“. The premise of this session was to curate best practices from Patient Leaders on monetizing your advocacy efforts. We’re currently pulling all the best practices together from the session and will be publishing a course on our platform this summer. STAY TUNED!

If you’re looking for a replay of the sessions, you can log into the HealtheVoices LIVE live stream to watch recordings of the conference.

To ensure ALL of the WEGO Health Network could enjoy the information from HealtheVoices, we had Patient Leader Chelcie Rice cover the event on our social channels. Perhaps you caught a tweet, Insta-story or post he published over the weekend. If not, we encourage you to go scroll through the hundreds of #HealtheVoices19 tweets.

Believe us, it’s well worth your time!

We asked Chelcie to recap his experience of the weekend. Below we’re honored to share his emotional, honest perspective of a tremendous weekend.

“After all the panels, the passing out business cards and connecting on social media the one takeaway I got last year and this year is I have a new family.  These were some of the strongest people I’ve ever met.”

Chelcie Rice
HealtheVoices 2019 Recap

by Chelcie Rice, WEGO Health Patient Leader Reporter

Staring at a blank screen trying to process my thoughts about this past weekend’s HealtheVoices 2019 in Dallas, TX appears to be more daunting than I thought.  How would you describe your second dose of a life-altering experience?

When I first applied to attend this year’s conference I did so to be considered as just an attendee.  Then I also applied to be a speaker on one of the panels.  That’s saying a lot for me because when I was filling out the application I didn’t believe they would even remotely accept me.  “I’m just a comedian and a mediocre one at that!” “Who would listen to me?”  That’s what I told myself while the other side of my brain was fishing for things to add about my accomplishments.  So I figured if you don’t ask, you won’t know. To my surprise, I was selected.

“I get up and do what I need to do, and I think, ‘How did I get here?’ And the answer is that I don’t know. The pressure is real with diabetes.” @ChelcieRice #healthevoices19 pic.twitter.com/KwFrTWqah3

— HealtheVoices (@healthevoices) April 12, 2019

I was crazy nervous about going to HealtheVoices this year because I was speaking but I was stoked. This year was my second time and I came home feeling empowered and most of all confident in my ability as an advocate.

Being on that stage delivering my portion of my panel on resilience was a bit stressful.  I wasn’t sure I prepared as much as everyone else.  My main worry was if anyone would understand what I was speaking about.  Turns out I got a great many compliments after the panel.  Many totally agreeing with me. I’m the master of overthinking.

After all the panels, the passing out business cards and connecting on social media, the one takeaway I got last year and this year is I have a new family.  These were some of the strongest people I’ve ever met.  All fighting different causes for the people who live with chronic illnesses.  There were several caregivers there also sharing their experiences about caring for their loved ones. This conference is by far my favorite because it goes further than any single diabetes, cancer or HIV advocate conference will ever go. 

When you attend HealtheVoices you go to recharge and get inspired.  You go to remind yourself why you became an advocate in the first place.  But most of all you go to get reminded that you will never be alone. 

When you attend HealtheVoices you go to recharge and get inspired.  You go to remind yourself why you became an advocate in the first place.  But most of all you go to get reminded that you will never be alone. 

Every single person there has been where you’ve been and where you’re about to go and they’re all a text, Tweet or DM away.  If you’re an advocate searching for your path and questioning the how’s, if or why’s then you need to try and attend this conference.  If I never attend it again I’ll never forget the people and what I learned from them all.

I don’t think I’ve ever dreaded going home as much as I did when it was over.

Thank you to today’s presenters and sponsors, and to all advocates – here and at home. You continue to remind us all that a little heart can indeed do big things #HealtheVoices19 pic.twitter.com/hf3eMHe84n

— JanssenUS (@JanssenUS) April 14, 2019

Looking for more HealtheVoices coverage?

Check out the following posts from WEGO Health and beyond.

HealtheVoices 2018: Finding My Tribe
HealtheVoices 2017: Together We Thrive
HealtheVoices 2016
HealtheVoices 2015

The post HealtheVoices 2019: A Little Heart Can Do Big Things appeared first on WEGO Health.

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There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

This past week, the WEGO Health team divided and conquered to attend HealtheVoices (LINK) in Dallas, Eye for Pharma in Philadelphia and DTC in Boston. In honor of this busy (but exciting) conference season, we’re taking this week to recognize the Top 10 Healthcare Collaborator Patient Leaders.

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

Amanda Greene

Lupus Patient Leader

Facebook | Twitter | Instagram

“Diagnosed with Lupus over 36 years ago, I openly share my healthcare story, resources and support online. I strive to raise awareness for Lupus, Chronic Pain, Fibromyalgia, Osteoarthritis and new technology (like “how Virtual Reality can help patients reduce their pain”) wherever I am, from Capitol Hill to participating in a healthcare chat on Twitter, or giving a keynote from the stage in New Orleans at the Health IT Expo conference. As a patient advocate, I believe that sharing patient stories are vital to improving the healthcare system.” Connect with the 2018 Healthcare Collaborator: Patient winner.




Jenni Grover
Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click here to learn more about Jenni and the Chronic Babe Community.

Julie Eller

Arthritis Patient Leader

Facebook | Twitter

“I’m a patient gone professional. Every day when I come to work at the Arthritis Foundation, I get to translate my personal polyarticular JIA experience into advocacy action as the manager of Grassroots Advocacy. My passion is helping to elevate patient stories to the center of our health policy decisions. It is my mission to empower patients to embrace their story, remember that they are the experts in their care, highlight that their voice matters, and affirm that patients are central to building a better world for people just like them.” Connect with Julie.


Lisa Rosenthal

Infertility & Family Planning Patient Leader

Facebook | Twitter

“Little did I know, 31 years ago, when I first started trying to become pregnant, that infertility and family building would become my life work. The disease of infertility is a thief, trying to rob us of the basic, fundamental right to have a family. It’s a disease that’s often dismissed as lifestyle, it’s often shrouded in shame. Like any other disease, we deserve insurance coverage, treatment, and support. I’ve advocated for ALL people who want to become parents, first through not for profits (Resolve and The American Fertility Association) and now with Reproductive Medicine Associates of Connecticut. I’m also a proud board member of Resolve New England. Click here to learn more about Lisa.

Danny van Leeuwen

MS Patient Leader

Twitter

An action catalyst empowering people traveling together toward best health. Wears many hats in healthcare: patient with MS, caregiver, nurse, informaticist and QI leader. Current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. Serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support Learning Network. Reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness Advisory Panel. Active in the Society of Participatory Medicine. Recently published in BMJ. Blogs weekly: www.health-hats.com Click here to get to know Danny.


Amanda Marie

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.” Follow Amanda’s journey.

Rachel- Rocking2Stomas

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“Hi, I’m Rachel and I am 31 years old and have been ill for 10 years with a rare condition called Pure Autonomic Failure where my bladder and bowel have failed to function. Due to this, I have 2 ostomies: an ileostomy and a urostomy and still am a regular inpatient due to recurrent sepsis. My blog is a platform to actively raise ostomy awareness and in particular urostomy awareness (the forgotten stoma). I talk about life with 2 stomas and work closely with stoma companies, Consultants, Nurses and Allied Healthcare professionals. I am passionate about being a voice for people who may have lost theirs to help improve patient care in the UK. I also support old and new ostomates.” Connect with Rachel.


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There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  The Internet is a vast place, making it nearly impossible to find all of the amazing content that exists. For the Best Kept Secret category, we turn to the Patient Leader Network for recommendations of who we should be following in hopes of shining a light on the hidden gems of the online health community. Take a moment to follow these inspirational leaders and you’ll quickly realize why they’re a Top 10 Best Kept Secret…

  Amber Wallace  Ostomy Patient Leader Facebook | TwitterInstagram

“Sup Ya’ll? I’m Amber! I have Crohn’s disease, and had a complete colectomy. I now live life with an ostomy bag, and a HUGE SMILE. I desire to use humor and lightheartedness to help educate and encourage other Ostomates. I want my YouTube channel, and other social media platforms to be a place where patients can not only learn, but be encouraged to live their life to the fullest. Life without a colon, and with a bag is pretty rad, and I like showing people that! I love Jesus, people, and queso dip. Check me out on Social Media at “Ostomy Diaries.” Connect with the 2018 WEGO Health Awards, Best Kept Secret winner Amber. 

  Kate Weldon Leblanc Infertility Patient Leader Facebook | TwitterInstagram

Kate Weldon LeBlanc, BSW, MPA has been the Executive Director of RESOLVE New England (RNE) since January 2015. RNE is the leading voice and progressive driving force connecting the New England community on the many paths to parenthood. Kate has a strong personal and professional commitment to infertility. Prior to her arrival at RNE, she worked for the Center for Early Relationship Support of Jewish Family & Children’s Service, the Child Advocacy and Government Relations departments of Boston Children’s Hospital, and the Massachusetts Legislature. Kate holds a Bachelor’s of Social Work from Skidmore College and a Master’s of Public Affairs from the University of Massachusetts Boston. Learn more about Kate and RESOLVE New England’s mission. 

 

Mike Durbin Diabetes Patient Leader FacebookTwitter | Instagram

“I was diagnosed with Congestive Heart Failure in December 2008 at the age of 24. I was also misdiagnosed with type 2 diabetes at that time when what I actually live with is a form of type 1 diabetes called LADA. I began my blog, My Diabetic Heart, at first as a way to document and process what I was going through, and later continued to write in hopes that it would help someone else going through the same thing to not feel so alone. Nearly 10 years later, I’m still sharing my story because it has touched and inspired people to strive to make the most of their health and life. I live by my mantra, “A Little Heart Can Do Big Things”, and hope to impart that message to everyone.” Connect with Mike. 

  Bev Late Chronic Illness Patient Leader Twitter | Instagram

“I’ve struggled with my health for years but my advocacy on a personal level is pretty new. In 2014, I shared my recent bipolar diagnosis on Facebook. My passion then grew stronger and louder. In 2016, I started a mental health advocacy project, involving a blog, social media & public speaking. In July 2017, I had a virus that triggered chronic pain which hasn’t ever left. Since, I was diagnosed with both fibromyalgia and endometriosis. I took a break from advocacy, but in May I came back bigger than before with a broader focus: chronic illness. I’m currently advocating with Instagram and in-person networking/volunteering while building a website and outreach plan behind-the-scenes. Do you advocate for both a chronic illness and mental health? Connect with Bev. 

  Dale Reardon Disabilities Patient Leader Facebook | Twitter

“I am blind (Charlie is my seeing-eye dog) & from Australia. I want to help people with disabilities worldwide. I have created the My Disability Matters Club to provide a safe, respectful & tolerant online social community for the disability sector – but not for just PWDs, also friends, family, carers & businesses. Other social networks such as Facebook & Twitter have bullying, trolling & harassment towards PWDs & disability issues – MDM is providing a safe alternative to let you leave FB. I want to spread the message of equality, diversity & respect for all PWDs. MDM is in need of publicity, sponsorship, promotion & investment to help thousands more so please endorse/support MDM today.” Learn more about MDM.

 

  Kelby | Peachy Pains  Autoimmune Patient Leader TwitterInstagram

Kelby is an ambitious autoimmune advocate who is passionate about Health Public Policy. In 2008 she had to shut down the doors to her thriving event planning business because she was denied health insurance because of her pre-existing condition – Ankylosing Spondylitis (a form of autoimmune arthritis). “This nomination means so much to me because I love spreading awareness about autoimmune diseases, not only through patient organizations, but personally too. I love cheering on other fellow advocates and patients alike in their successes – everything from recovering from surgery, to achieving wellness goals, to having their Representative sign onto a bill.” Follow Kelby.

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There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leader community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

Whether you’re looking for a dose of daily laughter or hoping to connect with new Patient Leaders in the space, take a moment to meet and follow the 2018 Top 10 Hilarious Patient Leaders of the online health community.

Justin Birckbichler Men’s Health Patient Leader Instagram | Facebook | Twitter

“Testicular cancer – it’s a stiff conversation, and it may make you a bit testy, but we need to sack up. Once you get the ball rolling, I think you’ll find talking about testicular health isn’t a hard nut to crack. As a testicular cancer survivor, I write and am an advocate for men’s health through my blog, A Ballsy Sense of Tumor. One of my goals is for ABSOT to help others who have been diagnosed with testicular cancer to find the resource I wish I had when I first started. However, the main goal is to open up lines of dialogue about testicular cancer. I talk to and educate people about testicular cancer through as much humor as you can use when discussing cancer.”

Keep the ball rolling, connect with Justin!

Marla Jan
Lupus  Patient Leader Instagram | Facebook | Twitter

“I drew the short straw in the family gene pool- but I ain’t mad about it. I was born w/ a complex heart defect & had 4 open-heart surgeries by age 6. In 2008 I was diagnosed with Systemic Lupus (and overlapping autoimmune diseases), my baby maker was closed for business in 2013, and I had a double mastectomy in 2014. Every part of my body has a corresponding awareness ribbon. Instead of hiding under the covers, I started my blog, Luck Fupus. I realized I was reaching others & raising awareness. These days I travel the country sharing my crazy story to advocate for those who can’t, using sarcasm & humor to support and inspire, striving to make a difference in healthcare!” Get a laugh from Marla. 

Ardra Shepard MS Patient Leader Instagram | Facebook | Twitter

Ardra Shephard is a devastating illness expert, having lived with multiple sclerosis for more than 15 years. Her blog, Tripping On Air, is the irreverent insider-scoop about MS that manages to inspire without ever being saccharine. it’s frank, it’s funny; it’s what you’d want your best friend to tell you about what it’s like to live with chronic illness. Ardra’s on a mission to change minds about what it means to live with disability, to encourage better representation across all media, and to empower women living with chronic illness by demystifying the connection between disability and beauty. Connect with Ardra for a daily dose of laughter! 

Lauren Rowe Cystic Fibrosis Patient Leader Instagram | Facebook | Twitter

“My name is Lauren and I have been making chronic illness sexy since 1990. I was diagnosed with Cystic Fibrosis at birth and by the age of 19 I had spent a total of three years in a hospital bed, spent an eighth of my life doing physio and taken over 438, 000 tablets. Oh, and I had two weeks left to live. It was at this time I was lucky enough to receive a double lung transplant, which saved my life.”

Follow Lauren and learn more about her journey.

My Odd Sock
MS Patient Leader Facebook | Twitter

“At My Odd Sock, my goal is to share some humor to others who may be going through difficult times. I write about humor-related issues of multiple sclerosis (Yes, there are many!) as well as humor pieces to liven a reader’s weekend. Complimentary snacks & beverages are also served. Because I don’t have large sums of money to donate to the MS cause, these goofy writings are my way of giving back to others AND myself (As it helps me cope with my own MS). Whether I make an MSer laugh, smile or call authorities to have me arrested, I want the reader to forget about their disease for a few moments.”

Enjoy a few moments of laughter. 

Kelly Conway Arthritis Patient Leader Facebook | Twitter

“I am a patient living with Rheumatoid Arthritis, Fibromyalgia & Thyroid disease. I am also a cofounder of the International Foundation for Autoimmune & Autoinflammatory Arthritis. My passion is awareness & advocacy for the rheumatology community & all those living w/ chronic illness. I believe strongly in the patient voice & use my voice advocate on Capitol Hill for patients with rheumatology diseases. I love connecting w/ other patients via social media & my life is richer being a part of this amazing community. I write about my life w/ arthritis & my pets on my blog: As my Joints Turn.”

Connect with Kelly for more laughter.

Babble on Brooke  Spinal Injury Patient Leader Instagram | Facebook | Twitter

“Following a spinal injury 6 years ago, I, a professional speaker, slowly lost the ability to speak & even breathe at times. Became housebound 3 years in, adopting a strict protocol incl. daily home doctor visits. Somewhere along, I fell into a very deep depression. Thankfully, I found live streaming. I started sharing & created a safe environment for others to do so also. This past year I’ve taken it to the next level by incorporating my entertainment background to help others laugh. Each week my show at www.Brooke.Live does exactly that & it is incredibly rewarding. Laughter heals. I know the reason I’m still here is to help save lives through sharing, learning and laughing!”

Follow Brooke for more light & laughter in your day! 

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