Patient Leader + Thought Leader Conversations, Part 1: The State of Patient Advocacy

MarlaJan Wexler is a leader among Patient Leaders, sharing her very real and often hilariously profane survivor story as Luck Fupus. In her words, Luck Fupus is about “the girl, the nurse, the patient, the part-time superhero… tales of life with lupus, congenital heart disease, fake boobs, and an out-of-order baby maker.” We can’t imagine anyone better to kick off WEGO Health’s series of Thought Leader interviews – where top Patient Leaders will interview industry experts.

MarlaJan’s inaugural Thought Leader interview is with WEGO Health’s founder and CEO, Jack Barrette, weighing in on the effect of the pandemic on Patient Leaders and the evolution of patient advocacy.

If you’re a Patient Leader with an idea for a Thought Leader interview or a Thought Leader ready to be heard, let us know here.

MarlaJan: How has the pandemic affected the process of patient centricity and engagement?

Jack: In some ways, the pandemic shut down of HCP offices to rep visits has helped to focus industry attention back on patients in general. At WEGO Health, we’re seeing innovative companies thinking hard about how to help patients transition to virtual care, for example, which means more collaboration with patient community leaders to understand what that journey looks like. Pandemic nightmares like “it’s dangerous to go to your doctor” have caused patients, HCPs, and payors to get creative—together.

MarlaJan: How has it affected patient advocacy, in either communication with companies or in access to providers/medications/devices?

Jack: Slamming the door on in-person events has really hurt; some advocacy organizations rely on their annual conference or fundraiser, and opportunities for patients to spend quality time with companies and providers is invaluable. But the silver lining has been the democratizing of so many events that were limited to who could physically travel or who could afford it – now everyone is on the same work-from-home playing field, and for most patient advocates, that’s home-field advantage.
At the risk of cheerleading a global disaster, WEGO Health’s been seeing a really positive surge in companies and providers using web meetings to have more frequent, more collaborative conversations with patient influencers and advocates. Hosting five Patient Influencers in person for a day takes months of planning; hosting the same five on Zoom for an hour can happen six times during those months at a fraction of the cost.

MarlaJan: What has happened over the past few years to advance patient advocacy efforts?

Jack: There has been a movement—and I’m proud to say WEGO Health has been a part of it—to line up patient advocates as peers with HCPs and industry. More than ever before, we’re putting patient advocates at the table as accountable contributors and partners – recognizing their expertise and compensating them for real work. And healthcare companies are seeing the real impact of working side-by-side with patient advocates: better-designed trials getting completed more quickly, patient access issues getting tackled, even marketing becoming more authentic and effective with the help of Patient Influencers. That means patients-as-peers isn’t a fad; it’s the new way.

MarlaJan: Which companies are doing a good job of interacting with patient organizations, and how?

Jack: WEGO Health works a lot with life sciences companies – pharma companies – and there’s tremendous variability. There are a LOT of great things happening, so here are just two examples.

At GSK, their lupus team is deeply committed to that patient community; they work with Patient Influencers to support the whole life of a lupus patient, not just their relationship with a medication. The GSK team spends time talking with Patient Influencers and designs programs with them – a recent standout example is the #WhyITattoo campaign to raise lupus awareness.
Alnylam is a standout in the rare disease space; as a biotech, they’ve built a remarkable patient-centric culture and helped to grow advocacy around porphyria, for example, a condition where patients are just beginning to find each other. A top Alnylam exec was on a panel with me recently, and he told the story of their sales reps delivering medication to patients who could not leave their homes during the pandemic – that job is nowhere in their compensation plan. Still, as a company, they think of the patient first.

MarlaJan: What needs to be done to improve patient advocacy efforts, either on the organization side or the healthcare company side?

Jack: I frequently counsel advocates to share their stories – and the value of working with them. How can your credentials of fighting chronic illness and leading a community of patients help solve real problems for your partners? Don’t be so damned humble!
One consistent piece of advice for companies we hear from WEGO Health Patient Leaders is to avoid the wham-bam-thank-you-advocate approach. If you ask a group of Patient Influencers how to best educate their communities, don’t just get your answers and never call back! The companies that follow up and say “we did this with what your group said” or even “we couldn’t do that because of legal, but we heard you” – those companies are building real trust.

MarlaJan: Describe some of the best moments you have experienced with moving the needle forward in advocacy.

Jack: I have the best job in the world because I get to be inspired by patient advocates daily. There are some life-changers, like our live WEGO Health Awards presentations to 16 of the top Patient Leaders as chosen by their peers and industry judges – I love seeing the patients-are-why-we’re-here needle not just flicker, but get buried like a sound meter at a Guns n’ Roses concert when top healthcare industry presenters can’t hold back tears of gratitude and admiration as they hug the winners. “This is why I do this, why I am in healthcare,” they say.

But right now—this moment—is a best moment for me, too, because MarlaJan Wexler, a powerhouse patient advocate, is leading this very interview, and you’re scheduled to lead an industry panel on this topic. Ten years ago, a patient even attending an industry conference would have been “inappropriate;” 5 years ago, I might have fought to get MarlaJan onto a panel; today, you’re the moderator, you’re the leader, and goddammit that makes my year.

What Patients Value Most

WEGO Health VP of Business Development, Laurel Netolicky, was recently asked by PM360 to weigh in on what patients value most, especially in the era of COVID-19. Touching on themes such as having a seat at the table to help shape DTC plans, trial design, and being a part of all phases of the product lifecycle, Laurel’s expertise lends some great insights to pharma marketers as we enter brand planning season. Check out this preview below, or click the link below to read the full article on PM360.com with insights from Laurel and other industry leaders.

“Patients want to see authentic, trustworthy content from pharma companies. For ad campaigns to be successful, they should be built in partnership with real patients. Pharma companies already face an uphill battle being under strict regulatory constraints limiting their creative ability. We hear time and again from the members of our network of patient leaders that a pharma message must be transparent, useful for patients, and emotional to make an impact. The messaging must also be in a language that patients can understand.

In a recent survey, WEGO Health asked more than 300 patients from dozens of health conditions, “What are the top three types of information or support resources from a pharmaceutical company that are most valuable to chronic care patients?” The findings revealed that 98.5% want to learn more about help paying for medications followed by medication management at 82.5%. Yet, when asked how aware patients are of the financial support services provided by pharmaceutical companies, 61% shared that they are either “not at all aware” or “only somewhat aware” of these services.”

Read the full article.

9th Annual WEGO Health Awards | How it Works

The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders.

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.
Since its inception in 2011, the WEGO Health Awards have proven to be one of the best ways to honor, recognize, and celebrate the work of patient advocates, influencers and healthcare collaborators who are helping others and transforming healthcare – often without any formal recognition.
With 16 different award categories, it is the only program to recognize patient leaders across all condition areas and platforms; whether running an online support group, speaking at conferences or sharing their health journey on Instagram, there is truly an award category to recognize every patient leader out there.
The program is split into four different phases:
1. Nominations | June – July
2. Endorsements | July
3. Judging | August – September
4. Celebration | October
Last year, we received over 6k nominations and over 130k endorsements. From there, our judging panels narrowed 6k nominations to 75 finalists and later to just 15 winners. In partnership with HLTH, we had our biggest WEGO Health Awards celebration ever! HLTH sponsored our 15 winners, covering admission and travel expenses, to attend the HLTH event and be honored on healthcare’s biggest stage for their advocacy achievements.
Learn more about how the WEGO Health Awards work:

NOMINATIONS
Open June 9th-July 31st
Think of nominations as a way to recognize your favorite patient leaders for the work they are doing. With 16 award categories, it’s easy to show your appreciation for all the patient advocates in your life. To start nominating, simply visit click here.
🏆 Tip for Nominees: Share out your WEGO Health profile and ask your community to recognize you for the WEGO Health Awards. Don’t be afraid to post to social, reach out to foundations, and include in any email correspondence. Your work deserves to be recognized! Once you’re nominated, you’ll receive a Nominee Media Kit for easy sharing.
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/update a WEGO Health profile with additional information about themselves and their advocacy. Please note, notifications can take 24-72 hours from the time of the nomination submission

ENDORSEMENTS
Open July 1st – Jul 31st
This period provides a community-choice aspect of the program. Endorsements are a way to give nominees a visual show of support for a specific nomination, think of it like “liking” a post or photo on social media. For instance, if a nominee is nominated for Best in Show: Twitter, and you believe they deserve this recognition, your endorsement is the perfect way to show your support.
The three nominees with the most endorsements in each of the 16 categories will automatically become finalists.
🏆 Tip for Nominees: Grab Your Endorsement Badge | Once endorsements open (in July!), navigate to the ‘Awards’ tab, of your WEGO Health profile. Here you will be able to download images and badges to put on your sites to gain endorsements. We invite you to keep your badge up once endorsements are closed to proudly display your accomplishment.
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 six 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 a nominee once per award category they are nominated for, 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 additional three finalists will be determined by our judging panelists through numerous additional factors aside from endorsements.

JUDGING
August – September
We host multiple rounds of judging, after all, we receive thousands of nominations! Judges will be using the information provided in the nominee’s WEGO Health profile to review and score.
Determining Finalists
In the past, there were a total of five finalists, however, given community feedback, we will now be celebrating six finalists in each award category. To ensure the integrity of the program, half of the finalists will be determined through endorsement count and half will be selected through our judging process. Finalists are selected in two ways:
1. The top three endorsed nominees within a WEGO Health Award category automatically move on as finalists.
2. The subsequent three finalists in each category are selected by our network judging panelists. Finalists will be selected based on their relevance to that particular award and the information provided in a nominee’s profile. The finalist judging panels are comprised of past award winners, foundations, and organizations.
Once the top six finalists in each WEGO Health Award category have been selected, we’ll announce the finalists on our blog and then move into the final round of judging.
Selecting the Winners
Top industry experts and sponsors convene to review the six 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 Virtual 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.
🏆 Tip for Nominees: Update Your Profile | Having a completed WEGO Health profile allows judges to gain a comprehensive understanding of your mission.
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 network 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.
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? For example: 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?

CELEBRATION
October
The health of our community members is of utmost importance during the global COVID-19 pandemic. Though we’d love to celebrate in person, after much discussion and feedback from our Patient Leader Advisory board, we have decided to make the celebration strictly virtual to ensure all of our WEGO Health Award winners are safe and included.
Going virtual doesn’t mean the celebration stops though! We’re partnering with HLTH to bring patient leaders to the forefront of this industry celebration. Winners will be announced in a virtual ceremony during the HLTH event in early October 2020.
This year, winners will receive:
• $500 cash prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value $1500)
• Feature as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year*
*Winners will have priority for speaking engagement and industry exposure events throughout 2021, depending on the state of COVID-19.
We are so eager for another season of celebrating patient leaders. There are so many tremendous patient advocates, influencers, and collaborators out there doing powerful work – we look forward to shining a much-deserved spotlight on them!
We encourage you to view all of the current WEGO Health Awards nominees in the nominee directory
Click here to view the nominees.
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More questions? Please feel free to refer to the WEGO Health Awards FAQ Page.
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Written by WEGO Health
WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. We are the world’s largest network of patient leaders, working across virtually all health conditions and topics.