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Month: October 2016

Virtual support groups

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 tweetchatibdsc-1ibdsc-2

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)

Resources

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.

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Interesting reads #9

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Case study Spectrum Health System (2013). Engaging, responding within 24 hours and being HIPPA compliant on social media.

“Nothing about us without us” – patient partnership in medical conferences BMJ 2016; 354 Published 14 September 2016 Larry F. Chu et al. BMJ 2016;354:i3883. One key new highlight from this publication, in my opinion, is the dissemination of information from medical conferences by patients. The greater the participation of patients at medical conferences the greater the number of tweets.

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Juror over drug prices puts patient advocacy groups in bind. By Katie Thomas New York Times September 27, 2016 Interesting take on what is the future of patient groups. Their absence in the debate of drug pricing and donations they receive from pharmaceutical companies leaves one to think what role these groups will play in the future.

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Pharma and health hashtags

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Health hashtags are transforming healthcare research online, are encouraging collaborations and can bring like minded thoughts together and turn tweets into conversations. Let’s take a look at how pharma is using healthcare hashtags in their online engagement.

1) Is pharma using health hashtags?

I have selected some random tweets from pharmaceutical companies and below each tweet you can find my comments on health hashtags.

amgen

I would have added a specific oncology hashtag.

az-nami

I would have added psychology / mental health hashtags and also NAMI twitter handle.

gilead-science

If you can’t find a specific hashtag then submit one to Symplur.

az-fit2me

I would have added some diabetes hashtags.

Overall, I truly believe pharma can do a better job in using health hashtags.

2) How can pharma benefit in using healthcare hashtags?

It is an excellent way of getting your brand seen and heard

It is an excellent way of getting relevant information to the right audience

It is an excellent way to get clinician perspectives, since clinicians use hashtags

It is an excellent way of discovering important voices in healthcare

It is an excellent way to put lay people in touch with recent research & researchers with people with lived experience

It is an excellent way to encourage collaborations, especially around health care topics

It is an excellent way to identify topics of discussion

It is an excellent way to help collaborators identify each other.

3) Getting the right hashtag?

Sometimes hashtags can be overly specific and too generic making them hard to find and hard to collaborate on specific topics. I have come across hashtags that only have one or a few tweets. The Symplur Healthcare Hashtag Project is free platform for patients, caregivers, advocates, doctors and other providers that connects them to relevant conversations and communities. Can’t find a specific health hashtag, you can also add a hashtag on Symplur.

symplur-homepage

4) So how can pharma adapt to health hash tagging effectively?

First and foremost be sure to research a health hashtag before using it. If it’s rarely used it won’t reach a large audience. Do some social listening to identify health hashtags and topics of discussion. Sometimes pharma companies create their own specific hashtags, but it’s hard to develop a following. The best approach would be to have brand teams include in their campaigns popular health hashtags.

5) What are some of the most common health hashtags?

Symplur is your go to resource. On their website you can identify Tweetchat hashtags, Conference related hashtags, Disease hashtags and health hashtags that are regularly used.

symplur-healthcare-hashtag-project

Resource:

Symplur: http://www.symplur.com

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Interesting reads #8

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Invest in CX to drive customer loyalty, advocacy and smiles. June 6, 2016 presentation by Kevin Cochrane at Gartner’s Digital Marketing Conference. We need to remember that behind every device is a real human being. Customer experience is learning about real people.                   

Is AI Better at Diagnosing Disease than a Doctor? August 18, 2016 by Steve Arar. A look at how artificial intelligence such as IBM Watson, Google Deepmind and Babylon are being used in the medical field.                                      

How to run an empathy & user journey mapping workshop – medium – Harry Brignull Jan 4 2016. Understanding what real people want and need. Thinking in terms of users and journeys.

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