Lindsey Wahlstrom

Health-focused communications type with a penchant for dancing. (Opinions expressed are solely my own.)

[Lindsey Wahlstrom @lwahlstrom]

Exciting news out of the #ADA2019 conference!

[Breakthrough T1D UK @BT1DUK]

BREAKING NEWS: JDRF-funded researchers led by @T1D_TrialNet‘s Professor Kevan Herold find that #immunotherapy can delay #type1diabetes in those most at risk. Find out more: https://t.co/0c7iye25iB #T1D #Teplizumab #DiabetesWeek #ADA2019

[Lindsey Wahlstrom @lwahlstrom]

I know @CureClickTeam and their Ambassadors have lots of experience with this. Would love to hear some thoughts. #researchstories https://t.co/BZPmgn3xu8

[Antidote @antidote_me]

Really good point! Social media is one of the most powerful tools for story sharing #researchstories https://t.co/FHR5AcWleD

[Lindsey Wahlstrom @lwahlstrom]

Folks at @Healthline and our team are working on some of these questions now. It's an important problem to solve! #researchstories https://t.co/NUOMLpetxU

[Antidote @antidote_me]

Q4. Should/how should stories be used to communicate about medical research? #researchstories #ClinicalTrialsDay #ICTD2018

[Lindsey Wahlstrom @lwahlstrom]

So true. Peer-to-peer learning is really important. That's what's so great about your work. #researchstories https://t.co/l8PC5eVNPE

[MSWorld.org @MSWorld_Inc]

@antidote_me #researchstories
If patients are more transparent with their experiences with trials, I think it would ease fears of actually participating in a trial.

[Lindsey Wahlstrom @lwahlstrom]

We will be doing more of this in the near future. Stay tuned for more #researchstories from us. https://t.co/77Vv5z9DWh

[BrightFocus Foundation @_BrightFocus]

@antidote_me A3: One person's story about their experience participating in a clinical trial means so much more than stats and numbers. Video is an excellent way for people to share their stories. #researchstories #ClinicalTrialsDay

[Lindsey Wahlstrom @lwahlstrom]

Yes! This! Publication bias is a problem. It's important to hear all results and experiences. #researchstories https://t.co/beaoJO1BTy

[ALS Advocacy @alsadvocacy]

A3: Sometimes research participation isn't all peaches and cream. Those stories can provide valuable information for trial designers and investigators. Those stories are very important and should be told! #researchstories

[Lindsey Wahlstrom @lwahlstrom]

@antidote_me It can be so hard with the guidelines and regulations to share real stories, but they are so important. I love working with our partners like @LupusResearch to capture and share some examples. #researchstories

[Lindsey Wahlstrom @lwahlstrom]

I know @MelanomaReAlli has seen similar engagement with patient-written blogs! https://t.co/OZ8J3G8Y7p

[Nancy Ryerson @nanrye]

A2: At the Fox Foundation, some of our most successful blog posts were guest posts from patients. There are some specific experiences that only patients can really speak to, and it was meaningful for other patients to see them voiced. #researchstories

[Lindsey Wahlstrom @lwahlstrom]

That's intriguing... don't forget to send us the link when it's done! #researchstories https://t.co/C6BkcaaMMV

[Blue Faery @BlueFaeryLiver]

A2: Our community loves #storytelling. We have an ebook in the works. #researchstories

[Lindsey Wahlstrom @lwahlstrom]

You all are doing a great job of storytelling right now with your film #TurningPoint. That is a powerful example of #researchstories https://t.co/Jk0gVPziBm

[BrightFocus Foundation @_BrightFocus]

A1: There is amazing power in having patients share their experiences in their own words. #researchstories

[Lindsey Wahlstrom @lwahlstrom]

Hi @alsadvocacy so happy to see you here! We published a story about @ReginaHolliday on our blog the other day and included how I met you in that piece. I'll never forget your story, especially since you (literally) wear it on your back. #researchstories https://t.co/vJzhs6V2Z1

[ALS Advocacy @alsadvocacy]

@antidote_me Sorry to be a little late and can't stay long, but the story is the memorable thing that gives meaning to many unfamiliar "rare" diseases. #researchstories #clinicaltrialsday

[Lindsey Wahlstrom @lwahlstrom]

This is so important! We are so happy to be working with you on this work. https://t.co/KBRAHx7wrD

[Lindsey Wahlstrom @lwahlstrom]

@Healthline That without patient participant, new treatments and potential cures will not be possible. #MSTrialChat

[Antidote @antidote_me]

A9. Just last week, we were thrilled to see that stem cell transplants seemed to stave off relapses in a recent trial: https://t.co/WiBDyiv7kA. We’re excited to see where this research goes and we’ll be watching closely #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

@MSViews_andNews @MSWorld_Inc and @MSassociation all have the tool available on their websites. Just look for the clinical trial information. #MSTrialChat https://t.co/0kp3Ect9TY

[Antidote @antidote_me]

A7. If we may, we’d like to recommend that you check out our search tool, either on our website (https://t.co/qxiO2LW7lC) or on our partner websites. We’re making it easier than ever to find a trial match — you’ll just need to answer a few questions about your health #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

So cool! Do you publish the results where folks can see it? #MSTrialChat https://t.co/Vml7juciZt

[iConquerMS @iConquerMS]

@Healthline A2: iConquerMS addresses this by surveys sent to members every 6 months and asks as part of that what information is missing from our current knowledge. #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

@Science_37 makes "site-less" trials available for patients. Very cool organization - worth getting to know. #MSTrialChat https://t.co/gxKUJsPH4z

[MS Views and News @MSViewsandNews]

@lwahlstrom @Science_37 I personally have never heard of @Science_37 and so, I would then need to say that most others, do not, either -- #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

Love it! That is precisely the point of our work @antidote_me. Make trial information available when and where people are looking. Thank you for helping us make that happen! #MSTwitterChat https://t.co/25CrJ4iOUG

[MS Views and News @MSViewsandNews]

@lwahlstrom Probably would be a good idea for each Advocacy organization to provide a link available from a home page to all Clinical trials that are available so that the #PwMS community has easier access to accessing -- #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

Organizations like @Science_37 are doing great work to make trials more available. #MSTrialChat https://t.co/NCFwC9sCTj

[iConquerMS @iConquerMS]

@Healthline A2: Many Researchers are collaborating with multiple trial sites to make the trial more accessible to those having to travel. #MSTrialChat

[Lindsey Wahlstrom @lwahlstrom]

Would a digital repository of information work, too? #MSTrialChat https://t.co/wEroOAm1d3

[MS Views and News @MSViewsandNews]

@antidote_me A:2 - If we had a Thumb drive to post at or educational events of trials in the region of our program, we can show the attending audience. - #MSTrialChat