Raising awareness about a disease or health concern can be an excellent means to foster an appreciation for patients and families, encourage donations to research, or even education about preventative measures. Awareness holidays offer major opportunities to get the word out about a specific disease or overall community. Patient advocates can take advantage of this larger platform to share their personal stories and have an even greater impact on the communities they represent. Below are a few tips on how to prepare for and capitalize on awareness holidays!
“Have you ever thought of writing a book?”
That was the comment I kept hearing from medical and nursing students when sharing my story with them. After several years of hearing this, I decided to listen. I’m glad I did.
In between making the decision to write a book, and seeing it published, it was a good year and a half. Looking back, the actual writing was the easiest part. Join me, as I take you on my journey of writing, Courage Takes Guts: Lessons from a Lost Colon.
I attended the #HealtheVoices conference by Janssen in Chicago this past weekend as a social media correspondent for WEGO Health. I went into the event knowing that there was a lot going on so I did a few things to prepare and this set me up for an easy social media sharing frenzy over the 3-day conference.
1. Do research
As soon as I found out that I was chosen as a social media correspondent for WEGO Health I did a few things to make the actual conference easy to share. Being that this was my first time attending the event, I really studied the floor plan, learned about the hotel and read up on the presenters’ biographies. It is very easy to get caught up in the logistics and miss important shares when you are not prepared for the flow and dynamics of the event.
Janssen was awesome enough to provide me with a list of all the attendees, advisory board, and presenters. I followed everyone on the list on their social media sites. This helps auto-populate their social media tag when I went to put them in a video or post from my device.
2. Be prepared
I made sure my phone was fully charged, as well as my two non-electrical phone charging devices in case I am not near a plug.Make sure you have no special restrictions on taking pictures or video during the event. Some presenters have told me after a live broadcast of their speech that they didn’t want me to put out the video. I had to break it to them that they were live. During the event, I found myself so prepared I could actual enjoy the conference and listen and learn instead of only thinking about what my next post would be.
3. Be comfortable
The better you feel, plan ahead and pace yourself the better your shares will be. So many places are cold and I need a warm body to function, so I packed some layers so I knew I would be ok in all situations.
4. Log into the Wi-Fi and test it out for speed and strength
When you arrive at the convention location check out the Wi-Fi before the event starts. The password for your hotel room can vary from the one in the conference area. The Wi-FI may be slower because of large crowds at the conference so have a Plan B just in case.
5. Collect short quotes, sound bites, or interesting facts
I found I got more engagement when I shared a unique fact or tid bit. Even if I don’t agree with the information, it can be a conversation starter to those who follow your posts.
6. Tag the speaker/source for each post
I created a list of short notes on each presenter and made up some of the daily tweets I knew I was going to need ahead of time.
After the conference, it is likely that the presenters will go back and like/share your post. You will then see an increase in reach and engagement for the post.
7. Include images and videos
Including images with your social media posts will increase audience interest and engagement. Take lots of pictures and video, even of things that are behind the scenes, it makes your posts more engaging and everyone wants to see what they missed when they couldn’t attend in person.
8. Conduct short interviews
Conducting short 1-minute interviews of other conference attendees is a great way to connect with peers but also creating solid content. Ask your video interviewees to remove their conference badges so your video doesn’t seem dated.
9. Use the event hashtag
Retweet/Share others using the event handle or hashtag during the event or soon after. Be sure to like others using the same hashtag!
10. Provide a recap
Be sure to provide a detailed recap of your experience on your blog or for the organization you’re reporting for. This is a great opportunity to show off all the pictures and videos you took as well as share your personal experience at the conference.
As an extreme time cheater, I have found that these tips have helped me become a great social media correspondent and I know that they will help you as well.
Looking to put these tips to use? Be sure to create a WEGO Health Expert profile and showcase your talents!
Barby Ingle lives with chronic pain from Reflex Sympathetic Dystrophy (RSD), arthritis, TMJ Disease, migralepsy, hypothyroid and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website barbyingle.com
Peer to Peer connections are not unique, but they are often underutilized in market research. Patients can offer their first-hand experiences to corporate clients while serving as a direct liaison to their communities. Harnessing their resources can be a cost-efficient investment with high-yielding results, but it’s more matching demographics to bring recruits forward. Patient lead crowdsourcing has true benefits for everyone involved.
1. Reaching out by starting inward
The greatest benefit a peer resource (“Expert”) has is their network, especially in a small demographic like lysosomal storage diseases. I suggest starting with your closest circle of people. I started by reaching out to patients I’ve met at offices and regional support conferences over the years. I went on to tap active users of patient social media groups. As research companies cannot get direct access to these groups, a patient Expert has the advantage. There was noticeably more engagement when I posted on Facebook compared to outside users who attempted the same method.
A few months ago, a fellow WEGO Health-nut, Sue, told you about the Truvio survey platform, and called herself the Truvio Guru. Well, Truvio is all well and good, but I’m Corinna, the CIG Khaleesi, and I’m here to tell you about an even better* way to get involved with WEGO Health and amplify the patient voice.
Enter the Community Insight Group, or “CIG” for short. Like Truvio studies, Community Insight Groups are aimed at getting feedback from Patient Leaders about various topics for our partners in the healthcare industry. However, unlike Truvio, Community Insight Groups are live online meetings where Patient Leaders are able to chat and discuss these topics together – think a virtual focus group.