Chat 116 Summary: Social media and self-care in cancer survivors
By Fanny Gillet
On February 20th, #hcsmca discussed the link between social media and self-care in cancer survivors. To begin, I’d like to list the studies on the use of social media in cancer care and related resources that were shared during the chat.
- Internet and Social-Media Program for Improving Quality of Life in Long-Term Cancer Survivors Who Underwent Stem Cell Transplant
- A Systematic Review of Web-Based Interventions for Patient Empowerment and Physical Activity in Chronic Diseases: Relevance for Cancer Survivors
- Beyond statistics: how blog narratives provide a new framework for a richer understanding of the lived experience of breast cancer survivorship
- Cancer Survivorship in the Age of YouTube and Social Media: A Narrative Analysis
- Practical Guidance: The Use of Social Media In Oncology Practice
- Journal of Medical Internet Research
- Life, Interrupted: Posting Your Cancer on Facebook
- Tumblr: An Unexpected Cancer Support Group
- Stupid Cancer list of support for young adults
- cancerconnection.ca | parlonscancer.ca
- cancerview.ca | vuesurlecancer.ca
The first question asked
- T1: How can social media help encourage self-care in cancer survivors?
- T1a: Cancer survivors: Do your sm networks contribute to your well-being? How
- T1b: Health providers: Do you use SM to encourage self-care in cancer survivors? How?
Participants felt that social media is a great way for healthcare professionals to learn from patients and to share resources with them.
SM connects physicians via patients. Sharing knowledge of what other successful treatments etc. doctors have found. #hcsmca
— Mastocytosis Canada (@MastocytosisCA) February 20, 2013
As for patients, social media appears to be an easy way for them to share their personal stories. It may also help destigmatize and improve quality of life.
Personal experience using social networks: sometimes it’s easier to connect with strangers that share common issues.#hcsmca
— Alaina Cyr (@AlainaBCyr) February 20, 2013
@bizou2011 @colleen_young for stigmatized illnesses, online SM can help patients reach others anonymously for support #hcsmca
— Aurelia Cotta (@AureliaCotta) February 20, 2013
The second question was about the way social media can be used into program initiatives for cancer self-care. One of the first shared ideas was the possibility of using social media to create a virtual-coach program that patients could use to manage side effects while in treatment. Social media could also be used to collect data and to identify and manage symptoms.
T2: self-management virtual coach with both professional and peer guided support. #hcsmca
— Colleen Young (@colleen_young) February 20, 2013
hcsmca-ers also debated about the communities leaders and who can and should take this role? Should they be trained? We saw recommendations to not try to control online communities and nurture the natural leaders.
T2: I think of SM as a way to extend personal relationships beyond face-to-face. Programs could use to reinforce msgs btwn contact #hcsmca
— Alaina Cyr (@AlainaBCyr) February 20, 2013
@colleen_young i believe cancer survivors can and should lead the way in terms of peer support – they have walked the talk! #hcsmca
— Marie Ennis-O’Connor (@JBBC) February 20, 2013
More and more studies are showing that the use of social media does improve psycho-social benefits and a lot of patients already use these communications tools. However, healthcare professionals and the healthcare system could take better advantage of these technologies to help their patients.
The key thing about SM in the hands of a cancer survivor is that it is truly patient centric, #leapfrog the current system #hcsmca
— Glenn Lanteigne (@GlennLanteigne) February 20, 2013
@glennlanteigne: I think traditional healthcare and social media should work together to provide the best experience for patients #hcsmca
— Marie Ennis-O’Connor (@JBBC) February 20, 2013
Read the full transcript here. What would you like to add?
Trackbacks
- Chat 116 Summary: Social Media and self-care in cancer survivors … | Healthcare Social Media India
- Chat 116 Summary: Social media and self-care in cancer survivors | Social Media Marketing For Non Profits | Scoop.it
- Chat 116 Summary: Social media and self-care in cancer survivors | Health Care Social Media Monitor
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Thanks for sharing links to these research studies and including my own research in the list. It is a fascinating and growing area of research and one that I am excited to be part of. As the studies show, an increasing number of cancer survivors are using online media to engage in health-related social networking not only as a channel for personal thoughts and feelings, but also as a forum for on-going discussion and information sharing. Social media in this way provides healthcare researchers and practitioners with a framework for a richer understanding of the lived experience of cancer survivorship, and how it evolves over time and at key life stages.