The Origins of Curating Digital Lived Experience Narratives (Blog)

This Blog, by Victoria Betton over at http://digitalmentalhealth.co.uk/wp/curating-mental-health-content-online-what-do-you-think/ expanded on the twitter dialogue.

Curating mental health content online – what do you think?

Last night I took part in a conversation with @markoneinfour @psycle_doc @MHnurselecturer and @PsychorBust about curating mental health content online. You can find a storify of our conversation here. It came about as a result of Mark posting a blog about the demise of One in Four magazine with reflections on what had worked and what hadn’t. You can read his post here.

My PhD research has primarily focused on the now sadly departed The World of Mentalists (TWOM) blog which curated blogs and tweets from around the madosphere on a weekly basis – the nearest thing I’ve found to regular curation of personal/unofficial conversations about mental health. TWOM ran its course and is testament to the ephemeral nature of content online – things come and go, work for a while, and then no longer work. What I loved about TWOM was the fact that it was curated in a highly participatory way (guest curators each week), with many different perspectives, and shared fascinating blogs that I probably wouldn’t have come across any other way. It was also outside the boundaries or official or institutional conversations.

There are all sorts of different types of mental health content online, from blogs through to historical websites through to Wikipedia pages and Twitter chats. And no doubt lots more. Is it desirable to find a way of curating this content and, if so, what would be the best way of doing it?

Lots of questions to which I don’t have the answers but I’d be very interested in extending the conversation further and knowing what other people think.

5 Comments

Zarathustra on August 10, 2014 at 8:19 pm

Hi Victoria

Apologies for the delay in responding.

Interesting question, and I’m not sure if I have a definitive answer. Although TWOM ran its course, I think there’s still plenty of healthy dialogue out there. If I was to point to a natural successor to TWOM, I’d point at Twitter chats such as #wemhnurses – I’m not claiming credit for those chat groups, but I think there’s definitely a very similar ethos. Although it does need somebody to get the ball rolling, and people like Natalie Moore have done a sterling job there, the content is very much co-produced – it’s shaped by who turns up.

As for tools for curating, I’d say Storify is the most useful method at the moment.
Reply
- Victoria on August 23, 2014 at 3:40 pm
  
  Thank you for your comments Phil. I’m interested in a space that curates lots of different content, from Twitter chats to blogs and beyond. Yes I do like Storify too
  Reply
Stephen Williams (@MHNurseLecturer) on September 17, 2014 at 2:10 pm

Some thoughts on this. Something that came out of the discussion we were having (aeons ago in twitter terms) was that mental health content on the internet can be quite ‘fragile’. If it’s a blog hosted on a personalised website then it will only live on for as long as the person can afford that hosting. It it’s hosted on wordpress or similar blogging platforms then the chances are it will have more chance of surviving. Of course everything is saved on twitter, but how readily accessible is it? For twitter content we don’t seem to be able to beat storify for collecting up that content.

I’m therefore left pondering various solutions. Simply linking to existing material does nothing to preserve the material, so reblogging the material with permissions sought and obtained and linking back to the original from a ‘hubsite’ would seem one option. Asking a team of people to curate (and seek guest curators) of interesting material, write maybe editorials for what they have found informative, topical and useful with links to the reblogged material, storified blogs and raising the profile (where desired) of the sources of the information.

Perhaps a collaborative Wiki solution would be a way to have this happen? Or is this better achieved through a content management system like word-press with plenty of editor logins to spread the burden of work? A lot of front end work has to be done with Wiki’s to get them off the ground, and those participating have to be fairly tech savvy to endure the wiki-interface and conventions, which is one of the reasons why I’m reticent about that as a platform.

Having said this – I guess what I’m more interest in doing is this. I would love to get an open-access e-journal of lived experience out there somehow, which is related to this idea but also contains an element of providing a professional edge to the presentation of material. This to my mind would be providing a ‘parity of esteem’ to online mental health lived experience content.
Reply
- Victoria on September 17, 2014 at 6:07 pm
  
  Thank you so much for your comment Stephen. The approach you describe is not at all dissimilar to now sadly departed World of Mentalists – two editors with weekly guest editors curating content from the ‘madosphere’ as they described it as well as blog posts. My gut feeling that a WordPress blog could be the most simple approach with a range of editors who upload content and re-blog on an adhoc basis. You could have Twitter streams with certain hashtags embedded as well – still transient but curated in one place with rounded content. Part curation and part original content. If this has some legs then we need a big enough group up for doing it and some strategy for people to be able to come and go. I’m short on time but big on enthusiasm if we can get a group established. Whaddaya reckon?
  Reply
Stephen Williams (@MHNurseLecturer) on September 17, 2014 at 3:07 pm

Just to add, I’ve started playing with the Open Journal System which I’ve installed on my site, just in case this goes somewhere! https://pkp.sfu.ca/ojs/

Zarathustra on August 10, 2014 at 8:19 pm

Hi Victoria

Apologies for the delay in responding.

Interesting question, and I’m not sure if I have a definitive answer. Although TWOM ran its course, I think there’s still plenty of healthy dialogue out there. If I was to point to a natural successor to TWOM, I’d point at Twitter chats such as #wemhnurses – I’m not claiming credit for those chat groups, but I think there’s definitely a very similar ethos. Although it does need somebody to get the ball rolling, and people like Natalie Moore have done a sterling job there, the content is very much co-produced – it’s shaped by who turns up.

As for tools for curating, I’d say Storify is the most useful method at the moment.

Victoria on August 23, 2014 at 3:40 pm

Thank you for your comments Phil. I’m interested in a space that curates lots of different content, from Twitter chats to blogs and beyond. Yes I do like Storify too

Stephen Williams (@MHNurseLecturer) on September 17, 2014 at 2:10 pm

Some thoughts on this. Something that came out of the discussion we were having (aeons ago in twitter terms) was that mental health content on the internet can be quite ‘fragile’. If it’s a blog hosted on a personalised website then it will only live on for as long as the person can afford that hosting. It it’s hosted on wordpress or similar blogging platforms then the chances are it will have more chance of surviving. Of course everything is saved on twitter, but how readily accessible is it? For twitter content we don’t seem to be able to beat storify for collecting up that content.

I’m therefore left pondering various solutions. Simply linking to existing material does nothing to preserve the material, so reblogging the material with permissions sought and obtained and linking back to the original from a ‘hubsite’ would seem one option. Asking a team of people to curate (and seek guest curators) of interesting material, write maybe editorials for what they have found informative, topical and useful with links to the reblogged material, storified blogs and raising the profile (where desired) of the sources of the information.

Perhaps a collaborative Wiki solution would be a way to have this happen? Or is this better achieved through a content management system like word-press with plenty of editor logins to spread the burden of work? A lot of front end work has to be done with Wiki’s to get them off the ground, and those participating have to be fairly tech savvy to endure the wiki-interface and conventions, which is one of the reasons why I’m reticent about that as a platform.

Having said this – I guess what I’m more interest in doing is this. I would love to get an open-access e-journal of lived experience out there somehow, which is related to this idea but also contains an element of providing a professional edge to the presentation of material. This to my mind would be providing a ‘parity of esteem’ to online mental health lived experience content.

Victoria on September 17, 2014 at 6:07 pm

Thank you so much for your comment Stephen. The approach you describe is not at all dissimilar to now sadly departed World of Mentalists – two editors with weekly guest editors curating content from the ‘madosphere’ as they described it as well as blog posts. My gut feeling that a WordPress blog could be the most simple approach with a range of editors who upload content and re-blog on an adhoc basis. You could have Twitter streams with certain hashtags embedded as well – still transient but curated in one place with rounded content. Part curation and part original content. If this has some legs then we need a big enough group up for doing it and some strategy for people to be able to come and go. I’m short on time but big on enthusiasm if we can get a group established. Whaddaya reckon?

Stephen Williams (@MHNurseLecturer) on September 17, 2014 at 3:07 pm

Just to add, I’ve started playing with the Open Journal System which I’ve installed on my site, just in case this goes somewhere! https://pkp.sfu.ca/ojs/

The Origins of Curating Digital Lived Experience Narratives (Blog)

Curating mental health content online – what do you think?

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