Connecting via #HASHTAG
I enjoy being engaged on social media. I started with Facebook several years ago. It was a tool to stay connected with family and friends across the country, and I enjoyed keeping up to date on what was going on in their lives.
Facebook also offered me the start of a community of support. Friends, mostly moms, I had met along the way in our journey with Kate to help navigate the deep end of the healthcare system, rare disease, mitochondrial disease, the education system, finding supports etc. etc.
Eventually that community evolved into both open and closed parent and peer to peer support groups. I started one that was specific to the rare disease my daughter had, and allowed our small international community of families to share information and offer support. My friends Kim and Kelli started a page called One More Thing that offered a community for families that were struggling in the ‘system’ with their medically vulnerable children. This forum has now evolved to include over 600 members, and is also on Twitter (@OneMoreThing2Do). Although Irarely post on the Facebook page now, I’m still amazed by the questions and discussions that are posted, and the incredible knowledge and support that is shared by families who have ‘been there done that’.
This group and the sharing on Facebook and Twitter resulted in an interview with Dr.Brian Goldman (@NightShiftMD) on his CBC Radio Program, White Coat Black Art @cbcwhitecoat
Listen here: http://www.cbc.ca/radio/whitecoat/the-one-more-thing-mom-s-club-1.3232789)
Our family, mostly me, also used a great medically focused blog called Caring Bridge when we were deep into the early days of facing the health challenges we faced with our daughter. Caring Bridge offered us a place to privately and selectively share our story, post pictures and share longer posts with family and friends, particularly when we were admitted and isolated as in-patients in hospital. Many of our family and friends were grateful to have a place to go and get updates on Kate when they knew things were not going well.
Social Media = Community
And then I found Twitter…
Twitter, 140 characters (recently expanded to 280) of connection, sharing, mobilization, motivation, support and more.
Twitter for me has served several creative outlets that I am passionate about; connecting with the running/trail running/triathlon community with @runottawa @OttawaMarathon and @iRunNation; sharing information and news about mitochondrial disease @TeamMitoCanada and @MitoCanada; and most importantly and prominently for me now engaging with the rich and diverse patient engagement community of ‘twitter peeps’ who have connected online.
Selina Brudnicki @sbrudnicki
Reflecting on many wonderful people I’ve met thru social media changing the landscape for informed & engaged patients. Thank you! @anetto @SolidFooting @MichellecRansom @TheLizArmy @tessajlrichards @MikeWillis42 @tarrabrq @HamzaSKhan_ @DearlLilac @PatientCritical
Renee Gray @ReneeGrayGSLL
Great news @SolidFooting and I’m glad to hear that others are welcome to join.
Retweeting Julie Drury
Proud that we have over 700 patients, families and caregivers from across Ontario participating in our ‘virtual pool’ of advisors. Surveys, focus groups, collaborative opportunities, etc. We’d love to have you join at http://www.ontario.ca/patientengagement … #MPFAC RT to share.
As a community, we often offer a shout out to one another about how pleased we are to have connected. Twitter offers us a place to share and collaborate on so many issues related to #patientengagement #patientexperience #patientsafety #PatientCare #PatientsFirst
See what I did there? Those are real hashtags that I use on a regular basis.
The objectives with Twitter are broad;
- follow people and organizations that interest you
- ‘like’ comments, threads, links to articles, pictures etc. that inspire you, make you laugh, make you think
- ‘retweet’ any or all of the above to those that follow you so that you can share and sometimes remark on the stories and comments you are following
- ‘tweet’ your own ‘original’ comments, articles, blog posts, pictures and more to your followers — and create or share #hashtags to motivate more people to follow the tweets you are posting
Hashtags
As a community of patient and family experience advisors (which is my primary focus on sharing and retweeting on Twitter) there have been some incredible #hashtags to support our collaboration on particular topics that motivate and interest us.
Recently our community created a bit of a trend on Twitter (trend=hashtags that are followed widely) when the hashtag #HowNotToDoPatientEngagement stimulated a lot of thoughtful, provocative, and insightful tweets out to patient advisors and those who are engaging patient and families as patient advisors. Much of the credit for creating this hashtag and subsequent ‘twitter-storm’ of comments goes to @couragesings
@couragesings
Tweeting about variety of things: #ptexp, #arts, #music, #photography, #mentalhealth, #patientvoice, #ptsafety& whatever else I find interesting
#HowNotToDoPatientEngagement
Here are a few examples:
When everyone’s conference badge has their title and institution on 2 lines below the name and your two lines read ‘nothing’ ‘nothing’ #HowNotTodoPatientEngagement
Never ever say “we are all patients” to a patient who has been harmed in Healthcare. It is definitely a #HowNotToDoPtEngagement No no.
Hold meetings in the hospital. Because triggering #PTSD in people seems like fun. #HowNotToDoPatientEngagement
Schedule a focus group to get feedback from parents of kids with illnesses. Run it at 9am during a weekday when your target group is working. Say you tried to engage with parents. #HowNotToDoPatientEngagement
Include only 1 patient (to check off the box). #HowNotToDoPatientEngagement
Even CTV health report Avis Favaro got in on the action
Avis Favaro @CTV_AvisFavaro
Worth reading this thread on “Patient engagement” and how patients are often token voices in disease discussions by scientists #HowNotToDoPtEngagement — and great blog by @seastarbatita http://modelingchange.blogspot.ca/?m=1 #patientsmatter
If you are interested in reading each Tweet related to #HowNotToDoPatientEngagement, Bryn Robinson (@brynphd) has created a Google Docs spreadsheet on the hashtag because he thought it was so powerful.
I’d love to see you out there in the Twitter-verse, joining up with myself and other Twitter-peeps to start similar conversations.
You can follow me @SolidFooting
Thanks for reading.
I’m off to check my Twitter feed now.
