Summary of our first #CSSMchat – Weds April 24th 2019

The first #CSSMchat was held on the evening of Wednesday 24th April. We had 233 tweets using the #CSSMchat tag during the chat hour (and many more afterwards!) from almost 30 accounts, featuring survivors, caregivers, researchers and healthcare professionals.

We were scheduled to have a session hosted by Nicole Stout, an expert in physical therapy and cancer rehabilitation for cancer patients and survivors, but due to some last minute travel delays, she was unable to host (her session has been rescheduled for 29th May).

Instead, we took the opportunity to find out more about our new community members and what was important for them. We have curated a selection of tweets which summarize the main points raised in the discussion topics.

First chat topic, T1: What topics in survivorship are most important to you? What would you like to see us cover here?
This was a very busy topic with a lot of excellent points raised. Main themes were mental health, financial toxicity and the role of caregivers throughout survivorship. Others also mentioned pain and symptom management, fertility and also discussion of how any interventions could be implemented successfully.

Cancer survivors and caregivers talked about the emotional impact of late effects, coping with being a cancer survivor and the lack of cancer patients/survivor involvement in some decision making processes:

“You don’t expect problems decades later even if you’re told to. Feeling of regression from “healthy” to “sick/dysfunctional” identity is hard! – @CESchilstra

“Lack of representation of cancer pts and survivors advising programming and interventions that are designed for them’ – @realslimsheyla

“Survivors need to know that their experiences are not felt in isolation. There are many others who experience the challenges that go along with feeling misunderstood.” – @michaeltaccone

“My 22 yr old (survivor) is convinced no one understands him. The psychosocial supports needs to be there before :5 yrs, when things get more challenging in mind, body & spirit.” – @marb1111

“Late effects of treatment – from PTSD to infertility to secondary cancers – and how that is not always communicated to the patient. And how the heck can we keep up with all these specialist appointments (survivorship plan adherence)!” – @magthenomad

Health professionals and researchers also shared their interests and expertise:

“Mental health. Particularly the long-term impact of cancer diagnosis and treatments on emotional outcomes. We know that depression and anxiety can persist at clinical levels for 5+ years after diagnosis! – @DrClaireC

“Many people get messaging from their docs about exercising and eating better. But how does this get implemented into everyday life?” -@AlixSleight

“Pain and symptom management are important areas that are often not discussed in the survivorship context” – @PerriTutelman

Second chat topic, T2: What can Cancer Survivor Social Media do to help you in you as a survivor and/or with your advocacy, research or healthcare work?

A lot of the discussion here centered around increasing connections between survivors and members of the research community.

“From a research perspective, it would be great if @CancerSurvSM could help encourage participation in cancer survivorship research studies.” – @benderjack

“I’m grateful for any efforts that build bridges between survivors and researchers. We need to talk to each other more often.” – @AlixSleight

“I hope that @CancerSurvSM can be a place to facilitate communication between students and researchers and be a place to involve survivors and caregivers in the research process from engagement in the early phases to participation in ongoing research.” – @emily_wolfe6

“Help give survivors (& those living with active disease) a voice & a platform to be heard. Important insight can be provided by patients but not enough are given the opportunity to get involved in research. We are a HUGE untapped resource” – @badassbaglady

Third chat topic, T3: Survivors, would you be happy to participate in research studies that were linked to via @CancerSurvSM or other social media platforms. Researchers, would you be happy to use social media to ask for research participants?

This topic was raised by the discussion and related to cancer survivors participating in research studies that recruited on social media and any issues that came with this. Should the #CSSMchat hashtag be used to disseminate information about research studies to people who may want to participate? What are the ethical concerns that come along with this?

“Do people think this would be an acceptable platform to promote research and surveys” -@jjonestoronto

“As someone involved in research, I think this would be great but would love to hear potential participants thoughts on this” – @emily_wolfe6

“Hashtags belong to the community – It’s up to individuals which research studies they want to share and how they personally vet them. #AYACSM is often used to promote #AYACancer research studies and it’s up to individuals if they want to RT, participate, etc. – @EK_Drake

“As a researcher I wonder how an REB would feel about that. As a patient and a possible research participant I’m all for it!” – @mcintose

“Yes+yes! I’m happy to participate and would love to use it to invite research participants to my research! Social media’s so powerful – as an AYA survivor it’s my go-to for connections, and as a researcher working with AYAs, I’ve found it the best way to reach them!” – @CESchilstra

The final topic centered on other initiatives which connect researchers and survivors well, with people mentioning patient-researcher forums and questions being raised about why these initiatives are not more widespread.

We thank everyone who came along to the first #CSSMchat and continued to contribute to the conversation afterwards too!

Our next #CSSMchat will be on Wednesday 29th May at 9pm EDT/6pm PST

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