Twitter, RT, Tweet-ups and me
Kathy Kastner (@ability4life) thinks patient participation on health-related Twitter chats isn’t what it should or could be. While she recognizes the inspired contributions by e-patient Twitterers, such as @rawarrior, @stales, @chemo_babe and @jodyms, she feels patients remain under-represented compared with the effort and interest clearly demonstrated by other stakeholders. In this guest post, Kathy explains why she thinks the patient voice seems to be missing.
By Kathy Kastner
I opened a Twitter account mid-2010, as part of my web plan. With my second life as publisher, editor, writer, all-rounder of Ability4Life.com, I knew I had to open my heart and mind to social media. I am LinkedIn and Facebook’d. But it’s Twitter that’s really got me thinking. To be clear: I do not tweet about my daily goings on. In fact, often I don’t even send my own tweets – instead re-tweeting musings, links, insights that strike a chord or my fancy. These re-tweets (RT) are not from random sources. They’re usually from people who participate in common interest health groups, each of which has a once-a-week hour-long tweet-up (also known as Twitter chats or Tweetchats).
There’s health care social media in the US, Europe and Canada (#hcsm, #hcsmeu and #hcsmca respectively), hospice and palliative medicine (#hpm), nursing (#RNchat) and inter-professional practice (#IPchat #MDchat). And every one of ‘em is welcoming and encouraging.
These groups are different in focus than patient-based forums, communities and Facebook, populated as they are by a mixture of healthcare-related businesses and organizations, including communications, branding, products, consultants, writers and policy wonks. Occasionally, a patient – or someone related to a patient – will join. I have a foot in both camps. I’ve been in the business of health education and communication for a couple of decades, been a patient more than once, and been privy to family and friends’ health journeys.
These dual experiences are what have me thinking: Where is the patient’s voice in these tweet-ups? I find that, however well intentioned and well meaning these twitter confabs and their participants may be, it still feels like “them and us”. What’s often talked about is what patients need and want; data around patient behaviour; discussions about how to use social media to effectively connect, properly approach and smartly satisfy patients (aka healthcare consumers, clients).
Why are patients – many of whom are active in so many other areas of social media – not joining or staying with these groups? My thought is that this evolving social media tool is being seized by forward-thinking strategists who’ve been hobbled by organizational or bureaucratic realities, and who now embrace the collegial opportunities offered by social media. It’s this thirst for connection with those facing the same or similar roadblocks – not in the medical system but in the organizational system – that need satisfying before our patient voices can be heard, let alone listened to and acted upon.
I hope that time for listening and hearing comes soon, because patients and businesses that feed our needs can learn from each other.
Colleen Young 
An interesting perspective, though I think it has more to do with the topics that we discuss than it is the people who participate or the reasons that we participate. It would be interesting to see if agencies like Infoway, eHealth Ontario, Manitoba eHealth, etc used social media to engage the patient community what the response would be like. Right now we are discussing how to get these organizations to engage using social media, a topic in which many patient likely aren’t interested.
Michael Martineau
eHealthMusings.ca
LikeLike
Michael,
Thanks for your response. For me, it’s ironic that – with patients having social media’d when twitter was just a twinkle in the eye – we (in my patient’s hat) aren’t better used and called upon toward achieving exactly what the ‘we’ in your post are striving for: getting organizations engaged (enlightened, empowered – and any other e-words that are bandied about as relates to patients) in sm.
Rather than assuming that ‘patients likely aren’t interested in the topics’ I humbly suggest this deserves a re-think: perhaps it’s the (business/organizational) language and assumptions of these tweet-ups that’s off-putting to patients. I see opportunity lost when a patient tweets – in response to a twitter pronouncement – one or another version of “Really? That’s news to me.”
To paraphrase my closing thoughts: There’s much that organizations (and I’m one of the ‘we’ to whom you refer) can and should learn from patients – toward tapping the power (and the glory!) of sm.
Kathy
LikeLike
Thank you Kathy for raising this topic. In my opinion patient participation in discussions about health care is imperative; be it one-on-one with a physician, in board rooms discussing healthcare policy and in social media. Patients and consumers are taking part in these discussions. We are all patients and healthcare consumers, are we not? (See Donna Cyer’s blog post for great definitions Consumers v Patients.)
Twitter chats about health and health care offer a great chance for everyone to say their piece, share and learn no matter their title. So how can we make you, me, us (patients, caregivers, consumers, Joe- and Jane-public) feel more welcome in these conversations and encourage you to be regular contributors?
My first over-arching observation lies in language. Perhaps the phrasing of the weekly topics alienates the patient participant. You may not be inclined to talk about “the effectiveness of a viral campaign”, or “balancing corporate branding with community needs” or “improving compliancy”. I will, from now on, re-phrase #hcsmca topics to encourage a wider patient participation.
But, I would also like to throw the ball back into the patient/consumer court. Make health-related Twitter chats your/our chats too. Submit a topic that you want to discuss. Phrase it the way you want. And give a great big holler when jargon threatens to push you out of the conversation. “Hey, what do you mean by “integrated health service plan”?
LikeLike
Kathy / Colleen,
Let me make it abundantly clear that I share your passion for engaging patients in various conversations about healthcare, from direct conversations about their health to broader conversations about policy and strategy. For too long the general public has been ignored in various debates and not included a critically important stakeholder.
Having stated my position, let’s remember that twitter conversations are like any other conversation … not everyone is interested in a particular conversation and that is OK. I think that the focus of hcsmca discussions to date have been focused on helping SM pioneers inside health organization make the argument for social media. Nothing wrong with that focus, in my view. Just bear in mind that not everyone will be interested in the resulting discussion.
I am OK with the focus of the discussions to date. There is a clear need for those people advocating for or responsible for social media in their organizations having a group to whom they can turn for advice and input. Let’s not lost sight of the value of the community that we have built to date.
As we evolve from discussing how to introduce social media to how to make effective use of social media I suggest we will attract more interest from the general public.
Mike
LikeLike
Nice post, Kathy
Yes, I don’t think anyone argues that we need more patient participation.
But here’s one view:
It’s OK if there are some places where the voices are mostly professionals. Why? Because these conversations can be extended elsewhere – Twitter isn’t be-all-end-all.
Also: given that we still don’t have enough providers online interacting, have a few spots where they can discuss those issues – thrash them out so to speak – actually serves patients in the long-run.
RNchat & MDchat are totally open forums – anyone can participate. But it is nice that there’s enough “breathability” for nurses and physicians to have their views more in the open.
Make sense?
LikeLike
Mike and Phil (thnks Phil!).
You both echo my assumption for the who-are-the right-now participants in tweet-ups. (To quote from my very own post ;)
“My thought is that this evolving social media tool is being seized by forward-thinking strategists who’ve been hobbled by organizational or bureaucratic realities, and who now embrace the collegial opportunities offered by social media. It’s this thirst for connection with those facing the same or similar roadblocks – not in the medical system but in the organizational system – that need satisfying before our patient voices can be heard, let alone listened to and acted upon.”
Good thing (in my opinion) that the e -universe can move at breakneck pace, enabling (purposeful use of that e-word) a speedier e-coming together of patients and providers/organizations.
This convergence peeks through every now and again: #hpm: question “would pts benefit from knowing how passionate we providers are?” A total resounding you betcha yessiree bob. (soon to be posted about)
To continued respectful (and inclusive) discussions: Upwards and onwards!
LikeLike
Thanks, Kathy & Colleen, for raising the issue and putting out the welcome mat. My thought is that many patients did not think that they were invited to join intra-professional chats. On the second, business oriented chats, I can see how having patient participation would benefit businesses, we’d answer a lot of your questions, but what do patients get out of it? We want better care for ourselves and others with our conditions. We’re very practical. A patient may not care if your viral campaign is successful, non-annoying yes, but not vested in it’s success.
1. Explicitly invite patients to chats
2. Patients may need to start our own chats
3. It may be ok that patients send out their thoughts generally instead of in the chat format.
LikeLike
I agree with you – and approaching them to invite makes a lot of sense.
The practical problem is: How do you know who a patient is?
Unless it’s a particular organization running specific chat, there’s really no way to invite particular people unless you know about them.
Having said that, there are ways to communicate that the chats are open to them and are welcome.
The thing with Twitter is that it’s such a peculiar medium. It really has no clear analogue. I can’t explain why here, but those of use who use it heavily probably know what I’m talking about.
I think over time, awareness will grow and we’ll see a lot more conversational osmosis. Until then, we can hope that more providers and other professionals get up to speed on these media so that they’ll be even better prepared to deal with open chats.
LikeLike
Kathy,
I understand where you’re coming from. At the same time, I think it’s difficult to be in two places at once.
There’s no way, as a cancer patient, would I would have been even remotely interested in the stampede of thoughts in a typical Sunday #HCSM chat. I had my job to do, which was fight cancer. I would have been very interested though, in chatting about #antinausea or #radiationremedies. I see a terrific amount of room for establishing patient-centered chats (which #hcsm, #rnchat, #mdchat aren’t, even tho patients are warmly welcomed) either on Twitter, or as Phil and Colleen have said in other forums. Community helps people heal. That’s all there is to it. When I was in treatment, the groups most interested in my feedback were pharmaceutical companies not surprisingly — unfortunately not hospitals, or physicians (least interested).
Also, because we are all in the thick of social media we forget the obvious. Engagement takes time. For people with jobs, children, daily interests, then add illness — an extra hour to stay on the computer and chat may not be feasible.
Contrary to what others think, I see a very big divide between the majority of patients with chronic illness and use of social media as part of treatment. I’m with you all the way on helping to change this.
Thanks so much,
Jody
LikeLike
This is a great conversation going on here! As a patient, health activist, and a Twitter chat creator/moderator, I have personally seen how the patient voice can be heard in these chats. As there is a place for professional focused or patient focused chats, there is also space for chats that integrate all those who are interested in a particular topic. My design or strategy has been to work diligently to include professionals, patients, advocates, caregivers… a variety of perspectives, in the Mental Health and Social Media Chat (#mhsm). It requires concerted effort when choosing topics and guiding the flow of conversation.
I have great respect for the chats that are designed for professionals in particular fields, but I welcome and encourage (perhaps would even urge) professionals to go ahead and take a step inside the chats that may seem more patient focused, as their voice is needed and in my opinion, wanted, in these spaces. In the same tone, I would urge patients to get out of their comfort zone and push themselves to share their voice when appropriate in other forums, as well.
I also believe extending the invitation is an important step to letting all know they are welcome.
LikeLike
Hi Kathy
Great post, and a fascinating conversation here in the comments, too.
To speak to the subject of Healthcare Social Media Europe (#hcsmeu), it was the original conception of Silja Chouquet (@whydotpharma) and myself that the chat would provide, among other things, a space wherein all the voices that participate in the health conversation could hear and respond to each other.
A lofty aspiration, perhaps, and one I suspect that will never be attained.
There could be any number of reasons for that. Not explicitly inviting patients to participate would certainly be one of them, but some patient advocates have found their own way to the group, and are regular contributors.
I’m pretty sanguine about this.
My take on the question is that on reflection it is only to be expected that a subset of patients, namely those whose definition of democratizing the health conversation extends beyond the specific interests patient voices express (and there are many of both), would feel inclined to participate in the first place.
That’s entirely understandable, for the reasons stated above, and more.
Nevertheles#hcsmeu will remain independent, impartial, and oriented towards its niche interests. I suspect it will neither significantly alter the character of the subjects it debates, nor the language it uses to discuss them. However, it will, I hope, continue to provide patient contributors, and any other representative of any other constituency who may wish to join them, a space within which, when the mood takes them, they may air their particular interpretation of what ‘a democratic health conversation’ means in an environment that affords them respect with its characteristic generosity of spirit.
@andrewspong
LikeLike
Thank you everyone for contributing to this lively discussion. Herein lies the power of social media. How else could we have gathered so many valuable opinions from thought leaders around the globe in one short morning? And the conversation continues…
@mikestn says in his second comment above “I think that the focus of hcsmca discussions to date have been focused on helping SM pioneers inside health organization make the argument for social media.”
Interesting! Through my personal lens, a quick skim of the #hcsmca topics to date does not read as a concerted focus on “helping SM pioneers inside health organization make the argument for social media.” But that’s what Mike has taken away from the conversations and made them work for him. He goes on to say “…the value of the community that WE have built to date.” (all caps mine)
Yes, #hcsmca is a collective – our community – as are the other health-related communities listed in this post and ensuing comments. Like a community in real life, not all chats can be all things to all people all the time. I follow the continuing evolution of the make-up of each of these communities with interest.
LikeLike
Thank you all for such thoughtful, thought-provoking, and well-thought-out responses.
Having put forward patient-participation-benefit-to-business world…I’m provoked (in the most positive sense) to put my mind to DCPatients’ question: what would/should/could a patient (including me as patient!) get out of participating. (DCPatient: xcellent consumer vs patient post. will be responding to that)
To Colleen’s point: a discussion made possible by the fablulosity of sm.
LikeLike
Greetings all!.. after a night of (mild) debauchery (tequila and chocolate) I re-read all the posts.
It’s like a high-octane therapy session. Through this discussion, my thoughts about the missing patient voice have been put into a different perspective.
Colleen, thank you for providing the forum and your comments. And thanks to every one of you for taking the time to articulate and share your thoughts, and going about it so gently and respectfully. Much like the Academy Awards, I would like to acknowledge
@andrewspong: ” it is only to be expected that a subset of patients, namely those whose definition of democratizing the health conversation extends beyond the specific interests patient voices express (and there are many of both), would feel inclined to participate in the first place.”
Thank you Andrew! In addition to your gracefully put reflection, the way I see it, the patients who are now participating are exactly who should be participating at this stage of the conversation. Along with being motivated and keen on the possibilities of sm – we also have the energy.
Although even we who participate don’t always have the energy or inclination. Thank you Jody for putting this into perspective:” There’s no way, as a cancer patient, would I would have been even remotely interested in the stampede of thoughts in a typical Sunday #HCSM chat.”
Thank you abeeliever “I would urge patients to get out of their comfort zone and push themselves to share their voice when appropriate in other forums, as well”
I know I was totally intimidated by my first several #hcsm experiences. Now, I think, we are not merely early adopters- we participating patients can tackle issues that (hopefully) make it more comfortable for widen patient participation.
Thank you Phil: “I think over time, awareness will grow and we’ll see a lot more conversational osmosis. Until then, we can hope that more providers and other professionals get up to speed on these media so that they’ll be even better prepared to deal with open chats.”
You are so right. I’m chomping at the bit when I should be osmosing.
(I can now put energies toward a different bit to chomp on)
Thank you Mike for this perspective” let’s remember that twitter conversations are like any other conversation … not everyone is interested in a particular conversation and that is OK.”
DCPatient: A patient may not care if your viral campaign is successful, non-annoying yes, but not vested in it’s success.
DCPatient: Good point..and you’ve got me thinking: (assuming, boldly, that when you said viral campaign, that success is tied to business outcome) I wonder at the impact/effect of patients being reminded of — or given insight into– business strategies.
Once again thank you all for sharing your thoughts and wisdoms.
Upwards and onwards
LikeLike
How remiss of me not to applaud Colleen’s comment..
” …Submit a topic that you want to discuss. Phrase it the way you want. And give a great big holler when jargon threatens to push you out of the conversation…”
Will do!
LikeLike