14 Social Media Michael Rynne & Cheryl Petruk

Because that’s going to give you the impetus of future information that you’re going to put on there maybe the stuff that you’re putting on your social media nobody has interest in so then they’re gonna that’s gonna die they’re not going to go back to your social media because they don’t find the information that.

You’re putting on their relevant so you need to go on your administrator needs to be on the social media every day at least.

Once a day in my opinion to make.

It effective and efficient and.

Again replay you know offline campaigns if you have a video make sure that you get that video on your on your website or replay.

It and you can program it to replay or you know play on-demand podcasting things like that because that’s really what you know is great for people who can’t make an event so if you have a speaker who comes to a patient advocacy of it videotape them and then put that video on your on your on your website put it on your youtube link.

Put it on you know the Facebook page or the Facebook group that you have so that people in outlying areas who couldn’t get to the event can see it so engage in some product testing so if you’ve never utilized a platform of social media platform like Diggs I don’t know.

A thing about it experiment with it and see you know if you do if it does fit your needs as an organization share and present the information that you have from your organization to bloggers in order to gauge engage in a viral.

Wave there’s lots of bloggers out there who will pick up a message that you have so if.

Blogger in your area in your city or your country that you know they talk about community events and and they go off get in connection with them because that’s really important they’ll take your message and they’ll spread it and and it’ll just it will go viral triggering the conversation so engaging.

Your conversation whether it be in a blog or chatroom and make sure that you post those you know with hashtags so it comes back to your website or comes back to your Twitter account you really need to get that feedback and by doing utilizing those hashtags and and conversation tidbits will give you the opportunity to know what’s relevant or what the.

Buzz is in in your patient community and again develop an honest and viral state of mind again be very open and honest on your social media again you know.

A good disclaimer is that we are not medical.

Professionals we’re patient advocates we do not give medical information here if you’re seeking medical information please see your doctor very very important because we don’t want to give the perception that we’re giving medically formation out okay some behaviors to embrace embrace transparency do not post.

With fake names and I suppose that’s the different forms and helped unlocked.

We advise that here you use a fake name and do not delete critical comments don’t be afraid and response.

Them I suppose that will do with the health and luck as well where rails broke break out and I suppose Cheryl has spoken about it about setting up the structure within your group that we deal with CLL NPN that they’re not the knowledgeable people in your organization and what we did in CLL Ireland is we have clearer that looks after uploading all.

The information but what we do is we actually give her the information because I’m a caregiver and my wife is a patient it’s like you said you asked your husband so that’s where the information and Kyra then sends us something and said is it okay to put this up and we have made a few mistakes along the way not many it’s we’ve done very well ever but generally now for twelve months the stuff that we put up there’s no there’s no issues and builds trust by showing that you’re.

Truly listening again that’s on the forums when patients are talking teacher and you need to if.

That forum grows big like if many people eight hundred people and all you need your administrators that are on that if somebody comes on and maybe it’s putting the wrong information up we’re always very fearful at us you know they they will try and stay away from the religious stuff from that the alternative medicines and.

As you know yourself the dangers that that can bring having moderators is making sure that you put the rules of the social media up so if you have a Facebook page identify those rules of what’s acceptable for patients to post and if patients don’t adhere to those posts or caregivers or.

Whoever’s participating don’t be afraid to take that post down and send a send a note to that individual saying you know what thanks for your comment but the rules of the page or the rules of this forum are such and and unfortunately we.

Can’t continue your comment and just you know let them know that’s being open honest Frank and transparent and just letting them know that that is either you know not acceptable or if you rephrase it in a different way then we gladly have.

It on so combining your tools making sure that you use all your multimedia again consistently.

Leveraging your message by using multiple social media sites one.

Media or one profile really isn’t enough to see effects to get it out to your whole broader audience and combining the multiple tools will make you very successful again read all the conversations that are done about your patient group participate in these conversations from your administrators respond quickly so if somebody leaves a message.

Asking for some information try and.

Get back to them within 24 hours because if you don’t you’ll have lost them and share quality content again maybe your administrators have to check with executive or someone in the organization to make sure.

That a response or a paper or position a medical position is correct information and make sure that its quality and correct responsiveness I have an easy job this is great and.

Okay what actions to measure both see how the person in charge is doing responsiveness I suppose in your organization if few of you are actually watching what’s going on that you can kind of keep an eye on each other responsible for communication could be no be lower than 24 hours I suppose we have actually made that mistake that someone has left.

Something on and we didn’t respond and then and then they contacted they cut they take along to actually see a lot sports association and someone said CLI learn and are there and they said always sent a message and that’s where we actually saw if we picked up on another forum so it really really is important does end the patience because it’s a big thing when they contact contact you’re looking and number of quality blog posts number of mean of meaningful.

Comments and quality of content shared.

Is that if you do receive grant funding from our industry partners they have KPIs that they have to report on key performance indicators so it’s really important to be able to when you do things to have it measurable so that you can give them the statistics that they need to report back to their organization so try and keep try and keep what you have to give to what they require in mind when you’re doing.

Your stuff so if it’s measurable make sure that you can track it or you can count how many posts you’ve done or how many people have replied to a post that you’ve put on make sure that you can measure that.

Because your industry partner that’s the way the business is going from Pharma they’re gonna ask ask you well what was the return on me giving.

You ten thousand dollars for your website well then you can say well you know what we increased you know we redid our website we increased people looking at our website by 50 percent there’s been you know an upswing in.

People coming to our website we can show you that this time last year there was X amount of.

People and this year we have fifty percent more so that’s what they’re looking for they’re looking for those key performance indicators that we can give to them traffic and quality again number of links to other sites you want to work with other.

Blood counts or groups in your area or other MPN groups around the world let’s all link one another together so that our patients have that information from all over the world because certainly a patient in the UK a patient in Canada.

A patient in India a patient in Italy all have the same illness burden so let’s you know connect those folks.

So that they get the same consistent information all across the world so again you can set up google alerts to give you.

Information you can create a technique or a t-account to again scan the internet for you for.

New blogs new papers new posts you know if it has the name polycythemia vera in it it will pop up and it I’ll say this paper you know has just come online today and you know just again there’s all these different sites that you can use to give you that information this is just.

A copy of MPN cancer connection and their blog email addresses you know need to be your your email address should be visible on your website or any other social media you don’t want to miss the opportunity to interact and I see we’re just about out of time so again Facebook this is a sample Facebook page from CLL.

From the NPN horizons Twitter and that’s the examples that CLL uses by different tools I’m actually just to go back to can you go back on that one just actually what we use we use HootSuite a lot what we do is that.