WEGO Health Awards — Can We Nominate Tinnitus Talk?

[Candy]

Can we nominate Tinnitus Talk to raise awareness?

https://awards.wegohealth.com/nominate/sAq29NOywnKx1THZo8AA8E0-DP2aI0SZXyyWoXHQ9oY/about_nominee

The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire. 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. It is the only awards program that recognizes Patient Leaders across all condition areas and platforms, with over 4,000 nominations in 2018 alone!

 

[GSC]

Do it.

 

[Agrajag364]

Tinnitus Talk members/staff might be interested in the story behind WEGO Health. For years, drug and device companies gave whopping amounts of money to medical doctors known as "Key Opinion Leaders". The tacit role of such doctors is to spread the use of a drug or device amongst other clinicians, put their name to (often ghost written) papers in the medical literature. There are even agencies that find potential Key Opinion Leader doctors and put them in touch with drug and device companies.

https://www.bmj.com/content/336/7658/1402

That system is not well known about and isn't going to change any time soon. However, drug and devices companies have noticed that trust in medical information from doctors and the medical literature is decreasing over time and patients are increasingly getting their healthcare information, increasingly being influenced, by online health forums and other patients online. The drug/device industry, never slow on the uptake with a new marketing opportunity, has coined the term "Patient Opinion Leader", and cottoned on to the idea of giving patient forums, and patient influencers, money to push their products.

Enter WEGO, an agency that puts industry in touch with patient opinion leaders.

https://www.wegohealth.com/2018/04/09/patient-opinion-leaders/

https://www.statnews.com/2018/11/13/patient-influencers-get-a-voice-and-pharma-is-ready-to-pay-up/


What industry are buying is credibility. They have been buying some of the doctors' professional status and credibility, and now patient forums have credibility with patients they are coming for that too. They want to buy the people, the voices, that patients trust.

The online forum "HysterSisters" has long been the most popular forum for discussion of hysterectomy. They are sponsored by Intuitive Surgical, who make a surgical robot often used in hysterectomy. The forum is full of positive stories about hysterectomy using the robot and it emerged patients who posted negative experiences were having their stories removed -

https://www.healthnewsreview.org/20...match-many-hysterectomy-patients-experiences/


When another campaign group I'm in was offered industry money there was hilarity. The leader decided not to sell the group's credibility much to my relief.

So might be lovely to see the hard work of @Hazel and @Markku recognised, but WEGO are probably looking for "patient opinion leaders" to introduce to pharma/device industries.

 

[Hazel]

First of all, thank you @Candy for thinking of us! You, or any other member, are welcome to nominate us, we'd be honoured.

@Agrajag364, that's very interesting, and thanks for the heads up! Do you think there's any way of being involved with industry that wouldn't compromise our integrity?

 

[Agrajag364]

@Agrajag364, that's very interesting, and thanks for the heads up! Do you think there's any way of being involved with industry that wouldn't compromise our integrity?

Um. I think that's a personal decision to be made by those who put in the blood, sweat and tears to a patient movement. I think a lot of patient groups or charities accept money because they don't think there is any downside, perhaps not fully recognising the value of their independent voice. In practical terms the morality of it tends to depend on how harmful the potential treatments are for the condition being advocated for. For example the charity MIND won't take money from pharma because they want to be an independent voice when it comes to the harms/benefits of psychotropic medication.

It might not be so relevant for a group like Tinnitus Talk because the biological understanding of tinnitus is so much in its infancy that you are not a big juicy target for pharma. With other areas of health there are almost too many, too harmful treatments, not so with tinnitus. I guess if J and J made Lenire maybe you'd have had a call from them by now. Good thing they don't; I'm looking forward to hearing about your audit of the real life Lenire outcomes.

To be fair, I don't know the terms of such relationships with patient groups from the inside. Perhaps they expect little for their money. Doubt it though. In some cases perhaps groups build relationships with industry that helps them make connections in the healthcare world, without taking money themselves. I have noticed in the area I've been involved in it tends to be the industry associated charities that get invited to government or medical society events! That's due to the power of industry I think...

I am planning to pitch a radio programme to an outlet I know on a health issue and I don't want to use one prominent charity because they receive pharma funding, I'd like to find a fully independent voice. That's just me though.

I think you might make good connections at the awards and that you might not be the winners/targeted by industry because tinnitus is not a good enough target. Just a guess.

 

[Candy]

Feeling very naive, this is a great insight. I just wondered what exposure you'd get?

 

[Agrajag364]

https://www.healthaffairs.org/do/10.1377/hblog20200109.985594/full/

More on the darkness of WEGO health.