New Kids On The Block
Been surfing some HepC and patient sites today – checking what’s happening on the web. What kind of sites are in the running for giving people with HepC the opportunities to learn and share?
I was emailed this week by Matt Jameson Evans from nhsUnlocked to say they had linked to this blog so I wanted to check out their site. nhsUnlocked is the brain-child of two NHS hospital doctors – Chris McCullough and Matt Jameson Evans, the founders of the not-for-profit doctors pressure group, www.remedyuk.org.
They say
We want to expose the postcode lottery and by getting patients who are really motivated, we hope to do this. This is the only way we can bring pressure to bear on the government and the people who run the health service. We need good hard facts and by getting people to record all the data online we can present it to the people in control in a clear fashion.
The site is organized around illness Groups, for example Progressive Supranuclear Palsy, Chronic Back Pain, Maternity. Amongst these Groups, the site features the Hepatitis C Trust Group. Why Hepatitis C is not a generic group like other health areas, but a Hepatitis C Trust Group, is not immediately apparent. Maybe the Trust presents as a pre-formed group already pressuring the government? Or a ready source of hard facts and people to record data on HepC. Whereas the other “illness areas” may not already be so organised.
But, hey guys, thanks for the link to this blog. I’ll be interested to see where it goes and how it develops.
Checking their other links led me to having a view of the Forums. Not done that for a long, long time.
It was about a year and a half ago I fell out of the forum I established in 2005 while I was on treatment. I see the Boltons are still running it. Single-handedly it looks like, as Carol seems to be the only moderator. They changed the name, when I handed it over to them, to The UK Hepatitis C Forum.
Their site says they have 1071 registered users and 113344 articles – so that is over the four years it’s been open. Traffic seems to have peaked in Oct 2008 with 15,000 visits per month dwindling down to 446 visits in the month of January 2009 (according to stats generated by Webalizer Version2.01). Not sure what’s about. When I visited there were no members online and I was the only Guest.
HepCFriends is a forum set up about one and half years ago by several people who moved away from the UK Hepatitis C Forum. Their front page says they have 216 Registered Members and Total Posts of 11,605. Not bad for the length of time online. And a friendly forum it appears to be.
HepC Nomads is the most recently set up board. Their front page says they have 683 members and Total posts of 71,874. However, no more information from their front page. You have to join to see anything else.
My experience of running a forum is that many people with HepC “lurk” for a long time, reading the forums and posts before deciding whether they will “commit” to identifying themselves with a forum. Lots of people just read and never do join. So it’s a shame they can’t see what’s on offer here. And a puzzle to me that it’s a closed club.
I also checked some of the US Forums and still think their layouts are hard to follow – so the UK based forums have the upper hand here.
But I find myself wondering if Forums are still meeting the need. Certainly there is a lot of in-fighting amongst members that interferes and takes away from the experience for a number of people. And splits communities too.
I sense that new developments in social media, the new types of online communities such as Facebook and MySpace, are beginning to impact on the way we think about social connections via the internet. Developments like Skype, vlogging on sites like YouTube and Twitter are influencing us to connect with each other in new ways. They will also influence what we look for and how we make contact with others from our patient communities. Online communities will still be about sharing and support but in different formats.
There are new types of online patient communities already growing, carrying an emphasis different than the forums, a different type of support.
nhsUnlocked is one of these. And so too is Patients Like Me whose aim is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, they have created a platform for collecting and sharing real world, outcome-based patient data and then establish data-sharing partnerships with doctors, pharmaceutical and medical device companies, research and non-profit organizations.
Below is a video report (sorry about the ad) from CBS News about Patients Like Me
The focus remains on treatment and outcomes. But community and mutual sharing and support are still strong components.
Hepatitis C blogs like this one are dwindling. Checking the sites on my blogroll I see many are now cobwebsites. People who have completed or abandoned treatment have ended their blogs or sometimes just left them hanging.
Some bloggers, however are expanding and developing. There is a French blog for MS that has video interviews, videos from friends and other members, sells T-shirts in support of the MS societe, features news and views. A lively community feel.
As well needing to update my blogroll it makes me think what is next for here, what is next for me to do? Last year I needed to move on and make some transitions away from Hepatitis C. I also reached the point where I needed to return to professional work. I needed an income and I needed to stop being a patient.
What I have learned during that transition is that, while I do not live with the HepC virus any more, I do live “without HepC”. HepC hasn’t totally gone out of my life. I still think about it. My liver still hurts, I am careful about the small amounts of alcohol I take, I still wonder if I should have blood tests, an annual HepC test and whether I should track my Liver Functions. I still regularly get emails from people asking for advice and help dealing with HepC.
Well this ramble today about online developments in patient support is leading me to thinking. And to consider starting to look for a new HepC project to get involved with.
Any ideas or suggestions gratefully received. 
My Twitter
February 10th, 2009 at 8:46 am
Hi Ron… very interesting comments you have raised regarding the online world of forums.
When we set up the Hepcnomads it was decided that as it was based on medical information we would have it a closed shop. Many of our members that have registered still do just “lurk” and glean help, support and information just the same without posting. It also has helped us to keep out unwanted spam. We have medical professionals on hand to offer help and advice and of course our own individual experiences. We have even disabled indexing by the various “bots” that trawl the internet to stop publishing snippets of posts, we feel this protects our members confidentiality.
I totally and wholeheartedly agree that the in fighting is self destroying the HCV community and will serve no purpose what so ever. I was a part of that in fighting but came to realise that is was a negative and wasted energy. I ceased some time ago and made attempts at offering the hand of friendship in the hope of reconciliation, my attempt was rebuked. We need to work together or we will achieve nothing and get left behind.
We try and interlink with other sites as often as we can and share information with other forums including HCV Anonymous in the USA, AHSC in Australlia.
We like to be open to everyones way of dealing with HCV weather they opt for conventional treatment or decide to live with the virus and use alternatives to maintain a healthy life.
I consider you the founding father of online forums and the HCV community does owe you some gratitude for your input. As for future projects for you? Only you will know. I have been looking at Paul Desmonds data on The Truth ABout Hep C with interest and will try and focus some energy there, treatment allowing. As an ex drug user it is easier for me to be diagnosed than for some women that had a C section or transfusion. I am just the tip of the iceberg. People are suffering all for the want of a simple testing kit and awareness.
February 10th, 2009 at 4:57 pm
Very interesting comments and observations.
When the Hepcnomads was started it was decided that as it was a medical related site it should be a closed shop. It also helps to keep out spammers. Many members log on and lurk with out posting. We also prevented the internet bots from indexing the posts on the forum to prevent confidential information from being published.
February 14th, 2009 at 9:43 am
Hi John
Thank you for your comment(s) and the insight into what’s inside the “closed shop” and where you are currently focusing your energy.
I know what you mean about spam & bots – I get alot of that here – hence comments are held for moderation.
I’m glad you have realised that the in-fighting is a wasted negative energy. Being on the receiving end of alot of it personally I reached the point of deciding I no longer wanted to participate if it meant being expected to tolerate it. And I was.
If you run a forum without the in-fighting either internally or with other forums, hats off to you.
Ron
February 15th, 2009 at 9:01 am
Thanks for your support, really Thank You so much!
February 17th, 2009 at 9:49 pm
[...] Poor me, I got so excited this morning when I read about the NHS engaging with social media. It is actually NOT the NHS but an action group run by two NHS doctors as a political action group for patients (and staff) against the NHS administration. See their other action group site http://www.remedyuk.org. Thank you so much for pointing my error out to me Ron [...]
February 23rd, 2009 at 9:43 am
Hi Ron,
We gave your comments serious thought and have now opened the front page of the forum so people can see an example of what goes on and how active we are. They will have to register to read any posts as we still value our members privacy.
Thanks for your point of view.
Regards
John
March 2nd, 2009 at 9:44 am
Hi John
Sorry for the delay posting your comment – been down in your part of the country on a break.
Will stop by and have a look.
Ron
March 19th, 2009 at 1:27 am
Hi Ron
I’ll put my size 6’s in . I believe that I speak for the vast majority.Boundaries must be set ( forums must be moderated) and kept to and following your departure from HCV forums,it just didn’t happen anymore ( except perhaps hepcfriends)
My brother works in I.T. and assures me that we are no longer a good example of the spirit and support that the internet hoped to be , we have sadly become the opposite.
You are correct Hcv appears to be moving on ,to twitter,facebook ,you tube,myspace etc (that’s where many members of all forums have gone ,we felt betrayed) .I’ve never looked at this from such a positive perspective ,may be we’ve gone mainstream ( at last) It was nice to stumble on here again after I finished work ,I also live without HCV now ( as do many ,take a look at Nadine and Heather ,and many others) but I still Google those 3 letters HCV sometimes,to be honest to have you come top of the search was a relief .Ron please start another moderated forum , no pressure intended .
Sarah
March 19th, 2009 at 9:05 pm
Hi Sarah
Good to hear from you – and pleased to hear you continue to live without HepC. Yes we do still have this virus as part of our history and the fabric of our life – even if not in the present.
Not sure how I feel about my name coming up ‘top of the search’ for HCV on Google really. There are many other things about me I would prefer to be known for really.
Me moderate another public forum – with all that aggravated and liverish anger aimed at me again? You kiddin? I reckon I’ve done my bit. It’s not the people who want help I mind it was the others. Not even sure I want to look too hard into the Forums these days to see who’s lurking about in there. And as I have implied, I’m not sure that the time of the Forum hasn’t passed – for lots of reasons.
I sometimes think I would work on a project where it would again be contributing something that advances empowerment and supports people. Not sure what that is at the moment. I don’t think I have connected up with that yet.
Wishing you well
Ron
March 21st, 2009 at 1:36 pm
this is a good blog,http://hepchelp.blogspot.com/got lots of info and contact numbers
March 28th, 2009 at 9:11 pm
Hi phelpzie again
Your other comment – and link, DID get through – I just have been away from my computer for a while as I was out of the country.
I saw your blog – keep writing dude. Soon you can qualify as a new kid on the block – when you get yourself going there.
Let me know if those ads do yield any revenue. You will see I have avoided them on this site. But maybe I have overlooked a serious revenue stream. Have to say I am still suspicious of those ones that imply they can help HepC.
Wishing you well
Ron