Haythornthwaite and Kendall (2010) state “People are using the Internet in ways that are driving change in communities – specifically, where and how they are constituted – and creating transformative effects on how we define, attach to, and retain communal identity across online and offline venue”. Whether online (via the internet) or offline (face to face) support groups are where people can share experiences, information, challenges and seek emotional or moral support. Moving from what was once listservs or support groups via emails to online Twitter or Facebook support groups. If you want to be patient centric, then you need to participate or listen in to online support groups.
1). What are online support groups? And what do patients gain in participating in online support groups?
Preece, Maloney-Krichmar and Abras (2003) define online communities as a group of people who interact in a virtual environment with a purpose, supported by technology and guided by norms and policies. Basically the social interactions take place online.
Patients and caregivers gain the following from online support groups:
- Health related information
- Emotional / social support
- Access to individuals 24 hours
- Global connections / reach
- Sharing of experiences
- Ability to ask questions
- Possibility to meet and talk with others that have their same shared experience
- Overcoming geographical location
2). How are online support groups organized?
Online support groups form around topics of interest and like minded others. Value of an online support group is provided by the ability to answer questions and concerns. On Twitter they form around tweet chats or hashtags. On Facebook they form around groups. These support groups are all open to the public, which allow for greater participation. Closed communities such as mail lists, closed forums and closed chat rooms are not discussed here.
In 2012 Yasi, Taylor, Wells, Howell, and Raphael stated that social networking sites on Facebook provide a “psychological first aid as a support to community resilience building”, “Overwhelmingly people reported feeling a sense of connectedness and usefulness, felt supported by others and felt encouraged by the help and support being given to people. To a lesser extent people reported feeling hopeful about the future, actively involved and less worried”
3). How are online different to offline support groups?
All support groups offer informational as well as emotional support, whether online or offline. However, online support groups may help especially those that have difficulty in participating in face to face groups due to geographical location or may have a disability therefore not allowing for participation.
4). Good online support groups, what to look for?
- A skilled moderator
- Meets online at regular times or posts regularly
- Has a proper hashtag
- Tweet chat or hashtag is listed on symplur.com
- Has doctor participation
- Focus is on learning and on sharing of experiences and stays positive.
- Stay away from bashing in general (doctor, hospital, pharmaceutical)
- Stay away from data mining and spamming
5). Can pharmaceutical companies work with online support groups?
Below is one example of pharmaceutical company, @JanssenUS, working with #IBDSC online support group.
August 31, 2016 #ibdsc tweetchat
What seems to have worked in this tweet chat:
- Disclaimer was upfront @JanssenUS sponsored tweet chat and no talking of product was allowed and no sharing of personal information
What can be done better in this tweet chat:
- Pharma working at arms length. If you can’t join in the discussion then thank the participants for a great tweet chat.
- I hour and 1/2 can be pretty long, especially if you do not have a lot of participants. Tweet chats usually last 1 hour.
- Keep the conversation going in between tweet chats you will build a larger following, which adds to the strength of the online community
- Register the hashtag and tweet chat on symplur.com so that others interested can find and participate
Check out previous #IBDSC tweet chats:
April 2016 (https://storify.com/Sara_Ringer/dudes-with-ibd-recap-ibdsc?utm_content=bufferfdafd&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer0
Previous one in 2015 (https://storify.com/Sara_Ringer/teen-life-with-ibd-chat-hosted-by-sara-ringer-dan-?utm_content=buffer4ee38&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer)
Online Social Engagement by Cancer Patients: A clinic-based patient survey. Lawrence C. An, MD et al. JMIR Cancer August 19, 106 in Vol 2, No 2 (2016): Jul – Dec
Finding healthcare support in online communities: an exploration of the evolution and efficacy of virtual support groups. Donna Z. Davis and Willemien Calitz. Journal of Virtual Worlds Research. Volume 7, Number 3 Lantern (2), August, 2014.