Kanga Health Email on a “Patient Workshop”

I received an email from some company called Kanga Health inviting me to a workshop in Paris for a patient website. They said that they would video patient stories to put them on a website.

We will of course arrange your flights, transfers and accommodation in addition to a compensation payment of 300 Euros. Are you available to attend?

The email looked a little like scam or phishing emails, it had the hallmark foreign currency too (we use £ pounds here in the UK, and not Euros) and it used bold type for the “important” bits. It did mention the name of a fellow patient, and so the email looked quite believable. It was strange though that the email was signed off with not a landline telephone number and company address. It was signed with a mobile telephone number and a website.

It makes me wonder. If one of your relatives received such an email from Kanga Health, or a similar one, I wonder what your advice would be for them to do with it? It’s a rhetorical question, but it’s worth thinking before acting in many of these cases.

As much as we want to help other patients with the same condition as ours. It’s worth taking a pause, taking stock, and not letting things run away with us that could cloud our judgement.

So it was a real workshop it turns out. Collaborative patient events are often a very useful experience, and I’m sure that companies such and Kanga Health go to lengths to make sure that patients are looked after. It’s worth though to stop and consider how that information is then used in the future.

Anyhow. I’ve read lots of patient blog posts and websites that individuals have done themselves. They really do help so many of us, making us feel less alone and getting a different perspective on things. So if you have such a site, then keep blogging. If you don’t have one yet, then just start one up. I’m glad I did. I have found it therapeutic because at least I have control of my blog which makes me feel more in control of my own condition.

You will see that some people who had websites or blogs of their own to do with their medical condition have now taken their own sites down, or deleted those pages.They were able to help others while they could. They decided for whatever reason to take that content they owned down. It may be for relationship issues, for job prospects, to protect family members, or they want to move on. It may be because of social media sharing and comments that are inappropriate or trivialise their journey. Who knows – but it was their decision, and they were able to do that.

When you share your story with a company who puts it on a website that they (or the client company) own, you possibly may not have that option once published or where that content could perhaps appear when it’s shared on sites such as Facebook, Instagram, Twitter and Snapchat. Companies may put the patient video stories directly on YouTube rather than the website itself, it saves them streaming the videos. The genie will be out of the bottle. You might be able to withdraw your consent, but it could be too late.

Don’t Lose Control

So if you do receive an email inviting you to a videoed patient workshop, you may feel an urgency of such an invitation, or in follow-up emails. You perhaps could do with that money promised. You might like the idea of a journey and being put up in a hotel. It might sound glamorous and exciting.  Just think though, is it really worth it?

So as I said earlier. As much as we want to help other patients with the same condition as ours, take a pause, stop. Take control. Think about it. Then stop again.

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