14 Social Media Michael Rynne & Cheryl Petruk

A great database so when you can collect email addresses from patients or patient advocates in your community then.

Database to start to be able to send out newsletters to to be able to send out an update information so those are really important so what is social media you know it just a general term used for any interactive digital.

Technology as we’ve talked Facebook Twitter YouTube blogs and webinars so what are the real benefits of social media well it’s organizing the organization’s message will reach a wider audience it strengthens and builds relationship it engages your community it facilitates collaboration mobilizes your community around the issues that are important to them and create advocates and it’s easier and broader for a dissemination.

Of information okay so the do’s in social media and is to provide value.

Strategize be genuine and listen and be creative and I suppose what I I’ve you social media kind of for two different reasons one was we’re patient led organizations Cllr and so we’re trying.

To tell the patient’s about the new drugs clinical.

Trial so anything that’s announced a rash we would put up but that’s not really the form that patients would maybe communicate with each other about the the problems know that they.

Would have on a day-to-day basis living with the disease so well what we do we don’t want to reinvent the wheel and what we looked at is in the UK and Nick York was one the founder members.

Of health unlocked and the CLL element of health unlocked and today has nine and a half thousand cRIO members that all all have registered they all speak to each other they tell each other their problems it’s all.

It’s all and private and not private it’s public what they did they used are a made-up name so you can you can’t speak to patients privately.

And what has happened out is those nine a half tells members two days and 50% of them are active on a daily basis so you’ve got four and a half thousand so in Ireland in a small country we wasn’t going to reinvent the wheel and do it kind of a health unlocked for Ireland.

And it’s we found important with it was my wife’s that diagnosed with CLL that it was important to reach out to.

The international community and that’s where our information came from so what I supposed to be creative is that when you set up your social media make a decision if you’re gonna have a Facebook page maybe I’ll have a Facebook page.

For the stuff that comes from the American Society haematology the different things that happen around the world but then think about what you’re going to do for your patient communities and maybe Ireland because we’re small population I think the health unlock to something that we’re going to tap into and work a bit.

More you know something I think is so if you’re an advocate and you’re not a patient put yourself in that patient’s position what would you expect to see as a patient or what would you like to interact with as a patient so if.

You if you’re a caregiver like myself then I ask my my husband what would you like to see as a patient or what kind of information would you like to get so then I can get that patient perspective so strategizing we talked a little bit but we want you to be efficient so again don’t try and be all and do all determines your determine your audience and the goals.

That you want to achieve select the social technology that best fits for you and meets those goals so again for the Canadian NPN Network.

The ampion advocates my time I focus on Facebook Twitter and then of course after the conference YouTube you know to put all the the slides up.

And videos so that way we get that so we utilize those to our capacity as best as possible and of course use photos and videos and anything else that you can get from any events that you have because it’s a visual learning as well people will if they have to read everything they’ll.

Skip over it and they will pass pass it by but if they see.

A photo it will attract them to the message so it’s really important to use photos and this is just.

A picture of our MP n advocates Facebook page social bookmarking is another opportunity to utilize.

Social media as well as our RS readers which is kind of like the health network that Michael was referring to micro blogging Diggs that’s something I never heard of when I was doing in the research for this so if anybody has an experience with that let us know and conversations it’s really important to have that dialogue and those conversations with your patients other advocates you know a lot of these terms are business terms but they’re really really relevant to our patient communities so markets are conversation.

So our patient community is a conversation opportunity for our patients to have dialogue you know again markets are getting smaller more informed we know that our patients and their caregivers. Google they get all the information that they need from there then they start talking so it’s really about the opportunity to draw them in make sure that they get the right information that they’re they’re listening to the right individuals and not making assumptions on their own part yeah no problem on you know on misinformation so you.

Know the networked market so our community of patients they know more than what the doctors know about their own you know about the diseases in some cases you know we know patience we’ll go to the doctor and say hey this clinical trial I saw it on you know as we just talked about and the doctor is going home okay that’s interesting let me you know get back to you so really.

Our patients are very informed in their families you know as an organization we don’t realize that our markets are so highly networked and patients talk to one another on the Facebook pages through Twitter through any other social media.

And they’re getting smarter you know they’re getting more they’re embracing social media much more to communicate and have those conversations and we can you know we can communicate daily.

Or hourly you know with Twitter you can every hour you could Twitter something if you had someone dedicated.

To but people will come back if you get that.