Do Not Be Afraid to SPEAK UP & SPEAK OUT!

As I’ve been repeatedly gaslit here & had my threads locked, I reserve the right to remain skeptical about the new ownership & whatever it intends to do with this site.

We hear you and understand your concerns. We hope to remain a supportive community for you.

As this is all meaningless platitudes, you didn’t have to bother responding if this is all you have to say.

@SEO, you do have the right to remain skeptical, but we have repeatedly reached out to you to speak one on one. It is obvious that things will not resolve by back and forth on the forum through comments. This is why we’ve closed down forums because the conversation has been unproductive. If you wish to resolve and speak with us, please reach out to me and respond to the emails that I have sent you. I will send you another email right after this - please respond with a time that’s confidence for you so that we can talk.

And I have told you, others besides me are interested in what you have to say. They have posted on this forum to say as much. Which is why I’m not taking this ‘private’.


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Hi Grace,
No worries and thanks for your response as well. I appreciate the ability to communicate in a public (safe) way, where others are able to weigh in and express themselves if they choose. This thread’s title is appropriate - we shouldn’t have to be afraid to speak up, so I appreciate you not pressuring me into private email as a result. :pray: However, I think you may not quite have got the gist of what I was saying.

I’m concerned that some patients leaders will feel pressed to promote these medical products to their trusting audiences because as patients ourselves, many of us aren’t able to work full time, have large weekly medical expenses and often a lot of medical debt.

Social media influencers lost their credibility when the general population began to understand where their income came from, and that they would tell their audiences anything if they were being paid to do it, which is why these ‘Trust’ bars in your graph are so low for them now:

The trust in influencers was once much higher, but when big companies began paying them to sell products to their audiences, and their audiences found out about this, they lost their credibility. You can see that the ‘trust’ bars in your graph for patient leaders are high now, but this is exactly what your group is planning for this site - paying patient leaders to endorse medical products and drugs for healthcare giants. So, I believe that, if patient leaders follow the direction you’re planning for this website, trust in patient leaders will sadly decrease too.

Although I know many patient leaders couldn’t be bought in this way, I also know there will be many who would have to choose between promoting a product they don’t believe in, and not being able to afford their daughter’s surgery, for example. Please consider the ethical implications of this.

And it would only take a few leaders to sell out in this way for trust in the patient leader to be lost, just like it was for the social media influencer. Or worse, because we’re talking about people’s health here - vulnerable people (patients) who, as a group, experience frequent gaslighting, targeted scams, healthcare providers dismissing and mistreating them, and just about everyone is out to take advantage of them. Patients discovering they can’t even trust their patient leaders because they’re being paid by healthcare giants to sell medical products, would be a big blow. This could really hurt the reputation of all patient leaders in the mid-to-long term, and the ability patient leaders have to support their communities and enact positive change.

Please consider the ethics of paying patient leaders to promote medical products to their audiences, and what patient leaders, as a group, would be losing if that’s what this site became (under the hood).

I’m open to conversation on this topic in this forum. Actually, I’d really love it if you could prove me wrong here, and I will absolutely add a public apology to my first comment on this thread, recount what I’m saying, and explain my mistake. I loved the WeGo Health website and everything it stood for, and I’d love for you to explain to me why and how I’m wrong on what I’ve said. Thanks in advance for taking the time

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Hi Sarah! First of all, I really appreciate your thoughtful response here and the time that you spent to further explain yourself. I hope to do the same in return. As a starting point, it sounds like you and others are concerned about the merging of WEGO Health and Health Union. I want to provide you with my perspective as someone who has worked at Health Union for close to 5 years and then I will have Julie share her perspective from WEGO. I really encourage you to check out the Health Union website to learn about the mission of the company: https://health-union.com/about-us/ and to explore some of the condition-specific communities that exist: https://health-union.com/communities/. Through these platforms, there are paid opportunities for patient leaders to share about their experiences and to connect with and support others. And this is not to promote medical products. If you look at some of the articles (here is an example from a patient leader I have worked with: https://spinalmuscularatrophy.net/living/clothes-shopping-disability), you will find that people are sharing common struggles, tips for living with the condition, or highs and lows, among many other topics. I hear what you’re saying about patient leaders having many expenses or being unable to work. It’s the unfortunate reality that so many face. And yes, there are opportunities for paid influencers, but that is also not for everyone. Overall, we hope to provide many different opportunities and never want to push someone in a direction that they are not comfortable with. As mentioned, we really want this to remain a valuable platform for yourself and other patient leaders. I hope this helps to answer some of your concerns. I personally am really excited about what’s in store with the merging of these two companies and I hope that patient leaders like yourself will also see these benefits. -Graceann

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Hey @sarah.williams -

I know you were corresponding with Graceann, but I did want to jump in because you have made FANTASTIC points. All that I completely agree with. In the essence of transparency, I did send you an email yesterday to connect 1:1- not in an attempt to have a conversation that others couldn’t see, but an attempt to connect on a personal level.

Personally, I got into this field in 2012 because of my own health issues. I had to leave a career in IT consulting and was on disability for 3.5 years. I couldn’t walk (and at one point wasn’t sure I’d ever walk again), but it was the power of patients out on the internet sharing their own personal stories that helped me find a stem cell procedure that regrew part of my femur bone and got me back to living life. I started my own personal advocacy journey, began working with WEGO Health as a patient leader, and then in 2016 was hired to work at WEGO Health. Over the years, our team has been so focused on building this community to recognize patient leaders and to give them compensation for connecting with healthcare companies. I can’t tell you how many times we’ve had conversations with companies preaching the word and value of patient leaders and how these individuals not only need a seat at the table, but deserve to be fairly compensated as well.

You are 100% right in that influencers have lost their trust in the market because we see lifestyle influencers peddling mac n cheese and other products to make income. This is something we’ve been hyperfocused on since we started in the influencer marketing space years ago (as WEGO Health).

Patient leaders are individuals who are a trusted source of information in their communities. They’re sharing their own personal experience, information, tips, tricks, products that have worked for them, etc all to help other patients and caregivers have more information and knowledge than they did when they were in their shoes. They spend countless hours building their audiences and trust within the community and this is something to celebrate. The work of a patient leader often goes unrecognized and we’ve always strived to make sure we celebrate that.

When WEGO Health first started over 13 years ago, we recognized the power these leaders had in helping patients and caregivers connect with the information they need most. We started working with companies to bring these leaders together to create content, be sounding boards, and to have a seat at the healthcare table. Over the years our offerings evolved and a few years back we did launch our influencer marketing offering. Since then, we’ve worked with hundreds of patient leaders to co-create content talking about their own experience with a condition and have launched campaigns with clients driving back to their own sites. This has always been the majority of the compensated opportunities we were able to provide to the network. We do have speaking engagements and insights engagements, but those were more the exception. And, to your point, this is absolutely not an offering that appeals to everyone. And we recognize and value that.

With the acquisition of Health Union, we knew this was the perfect opportunity to expand our offerings with patient leaders and not only focus on influencer marketing, but also give them more benefits. With the expanded focus, we now can tap into the 40+ condition specific communities Health Union runs to give patient leaders compensated ways to write articles and/or moderate for the communities. For example, Health Union started with Migraine.com 12+ years ago and pays patients and caregivers to write the content on the sites.

Now, after the merger with Health Union, our influencer marketing product has evolved to not only working with clients to co-create content for their own products, but to also work with patient leaders to run ads and organic posts for the Health Union communities.

Your point about patient leaders pushing products that they don’t believe in is a fair and valid point. Having been in this space for over a decade now, I can firmly state that we’ve never worked with a patient leader who wasn’t bought into the campaign we collaborated on. In fact, before a patient leader signs a contract to be in a campaign they need to know who the company is and what they’re driving to. This is important for us to be transparent because we NEVER want people out there pushing products that 1) they don’t believe in and 2) don’t align with their own experience. At the core, that’s why the FTC guidelines were instituted and we strive every day to uphold those guidelines and standards. This is why we take the challenges we post on this platform very seriously. We look for thoughtful responses to why individuals would want to partake in these opportunities, we look at their social channels, we vet individuals before we work with them.

I personally have done talks on the value of patient leaders in the influencer marketing realm - with an emphasis in the healthcare space. It can be a slippery slope! This podcast is a few years old now, but I think it’s worth a listen because the host was arguing the same points that you are here (https://empoweredhealthshow.com/episode/patient-influencers-wegohealth-suzanne-zuppello/).

I respect and validate your concern with the acquisition of WEGO Health to Health Union. In all transparency, being a part of this community myself, if I did not work here I would question process and change as well. I’ve seen other patient companies get acquired and it not work out in the patient communities favor.

When all is said in done, I can firmly state that in my opinion, coming from WEGO Health, the acquisition to Health Union is not only opening up more doors to compensate patient leaders in ways we could not have done before (outside of just influencer marketing), but is also giving us resources to truly focus on the Social Health Network like never before. We’re in the midst of adding new rewards to the platform (gift cards which should be up by the end of this month under the rewards section, for example) and Graceann is currently reworking the content strategy to ensure that we’re providing resources to the network to help build them up as patient leaders in their respective spaces.

When we launched this platform, we did a survey of over 1000+ patient leaders (some in network, some out of network) and the 3 main problems leaders were looking to overcome were ways to gain valuable paid opportunities, ways to connect with other patient leaders, and ways to increase their knowledge/get a stamp of approval for being a patient leader. As we move forward as the Social Health Network I can personally say that these 3 things are still our priority and what we’re striving to do.

We’re always happy to discuss and talk more about our plans with our members. Each and every one of you is so valuable and I’m always amazed by the work that is being conducted in the various communities.

I hope I didn’t bore you with my long response. This network, patient leaders, compensation, and doing this all in an ethical way is a passion of mine. I truly feel like it’s my life calling and it’s why I absolutely love what I do.

We appreciate your thoughtful response in this forum and I hope that we can connect soon.
~Julie

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So Sarah merits a specific response here, but my thread didn’t. Interesting.

And several threads were deleted (a few I started but plenty more that belonged to others).

How long before the entire forum disappears?

@julie.croner @graceann.klunder
Thanks a lot for your detailed replies. Excuse my delay in responding - I want to look into everything you’re saying (and the podcast you’ve linked) properly, so am just finding the time :+1:

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@SEO Like I mentioned on your other post about this topic, we’re in the process of cleaning up the forums and are deleting forums that are older than 2022 and that don’t follow our community rules. Forums related to patient leadership and our courses will absolutely stay.

It might be handy if you posted the new rules so we know which ones we’ve agreed to?

Absolutely, @SEO! We reviewed all the links and the rules last week to make sure they were the most update ones, so you can find them here: https://wegohealth.influitive.com/forum/t/terms-of-service-privacy-policy-cookie-policy-community-rules-and-support/780/2

Thanks but I kind of need to see the old rules to know what’s changed.