Why the chronically ill are those who need online services the most.
Yes our disease is CHRONIC Lymphocytic Leukaemia, not the ACUTE Lymphocytic Leukaemia and thus we mostly have a little time to study our disease and plan for any therapy that is later required.
Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labour force isn’t located in Southeast Asia, but is rather found here at home and is virtually free. It is we, using our laptops and smartphones to perform tasks once carried out by knowledgeable salespeople and service representatives.
This was particularly salient to me this week: I spent an hour online browsing, comparing prices, reading customer reviews, and filling out billing and shipping information to get a great deal on a new printer. An airline charges me by the minute to talk to a person often with a long long waiting time. But I can schedule my travel for free online. My bank has limited hours, but its website is welcoming and responsive, even at 3:00 on Sunday morning.
Many of us don’t really mind taking on these responsibilities. We are pleased with the convenience of doing these tasks ourselves and are willing to put in the time. We like to look at all the options and choose the best one for ourselves.
Now also there is considerable optimism about the cost-cutting potential of health information technology – electronic health records, secure messaging with our chosen doctors and medication reminders. There is even blood pressure and diabetes monitoring now designed to capitalize on the efficiency and personalization offered by remote technologies.
But some of those with an acute disease are not using online health information and applications.
Why?
The migration of services from in-person to electronic comes with the assumption that IF we can explore, investigate, compare, communicate and purchase online. We will.
The article “The Digital Divide in Adoption and Use of a Personal Health Record” published in the Archives of Internal Medicine in 2011 suggests otherwise. Cyrus Yamin and his colleagues studied a large population with uniform access to an online personal health record through which they could view their medication lists, laboratory results, and appointment information. Of 75,056 people, only 43 percent had made any use of this service, and half of those who did logged in once or not at all. Blacks and Hispanics were half as likely to make use of these services compared with whites. While overall use by patients of online personal health records has undoubtedly increased, there are few reasons to believe that patterns of use have changed significantly since 2011.
It is easy to be lulled into believing that this lack of Internet use is a temporary problem that will be soon solved by the access afforded by the growing popularity of smartphones. This research suggests that access to the Internet is only one barrier. Many of us who truly need what online health services now offer are often ill or lack literacy, search skills, experience, confidence or cognitive capacity to use the online information and applications upon which we increasingly must depend or face expensive consequences. This problem is growing because today:
Many tools that could help us carry out our own complicated treatments are only available online. Advances in drugs and technology make it possible for us to administer complex treatments ourselves. We now operate in-home devices for infusions, oxygen, drains, dialysis and feeding. We take multiple medications that require constant monitoring and dietary and physical activity modification. We often struggle to do these tasks safely. Increasingly, information, guidance and applications are primarily available online to help us use our devices and organize, track and administer treatments to ourselves and our loved ones and to connect to expert help when our efforts fall short.
Certain comparative information is only available online. Most quality ratings for nursing homes, hospitals and doctors are available only online. Government health information will be online. Interactions about our health care are increasingly conducted online. The drive to increase the meaningful use of personal health records consigns administrative functions such as scheduling and updating or correcting our medical histories to us, the no-cost workforce.
A combination of incentives and exclusive online availability means that to find appropriate health care and make the most of it; we are required to be proficient with a wide variety of technical skills. This means that a substantial percentage of us must rapidly improve our health literacy, expand our rudimentary knowledge about our bodies and health care, and develop more technological sophistication — while we overthrow a lifetime habit of deferring to our clinicians — to ensure that we are able to benefit from the information and services of modern health care.
The consequences of not doing so are expensive in terms of our money, time and health.
Those of us who are unable, unwilling or too ill to respond to these incentives will lose out.
Sadly we all know someone who had a recent visit to their doctor and is now worried and confused.
From my recent personal experience I had a friend diagnosed with DLBCL, Diffuse Large B Cell Leukaemia.
So spread the word, recommend Health Unlocked to friends and acquaintances.
And to those with some computer skills, take some time to help out others recently diagnosed.
DICK
Written by
Kwenda
To view profiles and participate in discussions please or .
Hi Its true what patient power says that knowledge is sometimes the best medicine we have. Being internet savvy can be too much for some. Some shy away from knowing too much. Some just don't want to become familiar with on line web sites like this one, they don't have the time or they are just not well enough. But at the end of the day it's your own Dr/hospital which will decide your treatment. It's worth thinking about all these issues as it becomes an increasingly techo world. Best wishes
Dick, you raise some excellent points and make very valid observations with your post and in doing so prompt me to respond to certain concerns that I've had recently about who connects with this site and the experience they have. The value of any support site lies in it's ability to constantly critically evaluate it's content and responsiveness particularly to the people who you identify as being less computer literate, generally less confident, and maybe having poorer literacy and cognitive ability. Their needs and fears remain the same, in fact they're greater without cutting self advocacy skills.
<' So spread the word, recommend Health Unlocked to friends and acquaintances.
And to those with some computer skills, take some time to help out others recently diagnosed.' >
Recently I've reflected on what this site can do to help me on my reluctant CLL journey but more importantly, how I can continue to contribute as a volunteer to the general CLL community and in particular newbies or the ongoing 'strugglers.'
I use this site now in a more selfish way (shamefully) and I find almost as a 'scientific journal' resource. I'm often in awe and intimidated at the level of knowledge and understanding some members have. We all benefit enormously from their sourcing and involvement in the innovative research and development work even if much of it must challenge junior physicians in it's complexity. But, and there always has to be a but. How does this site then attract and appeal to the needy but unconfident people who may log in and think 'crikey, what the hell does all that mean?'...'it's too highbrow to me, I wouldn't dare ask a simple question because I'll seem really clueless'. I'm no slouch but quite often that's how I feel now.
We return to this question from time to time. It's the old, 'how do we make the site responsive, inclusive, less scary and a safe place for the less scientifically enlightened without making it a cosy, cuddle site? (although we'd all benefit from that once in a while I'm sure!).
I've observed many newly diagnosed don't return to the site. It's beginning to attract a dedicated cohort of very knowledgeable people and I learn daily from them.
But Dick's post opens up important issues about reaching the people who need us but may be scared off at the perceived level of sophistication and knowledge needed to use the site. And I make no apologies for wanting to address the deep emotional issues that people encounter with this condition (and their carers). Fear and the sense of being alone with something is a killer in itself. All the research teaches us that.
This isn't meant to be critical because the site is developing and evolving successfully. But we must maintain a balance or the general support element is in danger of being lost. I've looked at the latest posts (all majorly important) but found myself thinking, 'if I'd been diagnosed last week, would I pitch in there and just say 'Help'. Regrettably I don't think I would imagine it to be the right place. I'm sure many will disagree.
So what I'm saying is, sometimes it has to be ok to KISS (keep it simple stupid!) because this is often a very long journey and some are not yet out of the lay-by let alone speeding down the fast lane.
Regards to everyone regardless of the route they find themselves on.
Great post Dick; you've prompted some very interesting discussion.
If you are reading this and agree with Newdawn's very good point about the site content becoming too daunting, click on the grey 'Recommend' button at the bottom right of Newdawn's reply, so regular contributors know that they need to work harder to maintain that critical balance.
For those that do find the technical content rather overwhelming, rest reassured that you have plenty of company. Some of the Pinned Posts have been placed there specifically to help newbies with the basics. We were all newbies when we were first diagnosed with SLL/CLL! Refreshingly, some members are open enough to admit that they'll need to come back and re-read a difficult to understand post or referenced article a few times. Don't forget that much of what we are referencing is written by highly educated people that have had many years of university training after which they've engaged in regular professional development just to keep up in their fast changing field. When researchers are trying to find a cure for a currently incurable blood cancer, you can be sure that any reported breakthroughs are going to be highly technical and written in an esoteric specialist language. (I'm sure those that write and read these papers for a living also have to check up on technical terms too!) It does get easier to read the more technical posts with experience and you can always ask for a translation into layman's terms (and win yourself thanks from lots of other members that are relieved that someone else asked for that much needed translation).
In response to the Jangreen's point regarding deciding on which treatment, it's a truism that to ask a question, you need to know 90% of the answer, that is you need to have a pretty good grasp of a subject in order to understand an answer from someone more knowledgeable than you - such as your specialist. The better your understanding about what you'll be going through, the more pertinent questions you'll be able to ask, which will hopefully result in you making a more informed choice and then getting the most out of your treatment.
I have to say, that I agree with all that Newdawn says, except that I believe that the general support for all, has already been lost.
It is not only newly diagnosed people who don't return (I don't even see them arriving much now) but many who used to post, now don't. People obviously don't regard this as a 'safe place' where they can talk about how they are feeling and how they are coping on a day to day basis.
I hear you loud and clear, but I don't think this site has entirely lost its humanity... Certainly not while you're still here...
I'm sure it would help if people used clearer language and kept things as simple as possible (though of course there's sometimes a place for more complicated stuff as well). I'd also like it if people explained abbreviations more (I often see familiar letters/numbers but have forgotten what they mean - if I ever did know). And people like you and me (and many others) need to keep on saying when we don't understand things. Usually we get an explanation if we ask. Lots of people are hesitant to ask, but if they see others asking, they'll feel happier to do so.
Maybe there could be a new poll, sent out to everyone (including the "silent majority") asking how they feel about the site? What is helpful for them? What puts them off, about it? What would they like to be different? Some might actually be visiting and gaining help from it, even if they don't feel the need to post. Others might have problems with it, that we haven't thought of.
When I first found this site, about a year ago, I was very interested, and visited quite a bit. Then as my disease seemed fairly stable, I didn't visit the site much for many months. Which was fine for me. Later when my disease seemed to be "progressing", I came back here, with more interest. There are probably others like me - who will come back later, when need arises.
Anyway, it's good that this is being discussed openly now - hopefully a lot of good will come out of it.
I think it is important that people welcome the recently diagnosed with suitable discussion posts and questions. There are more recently diagnosed arriving and staying than ever before the analytic activity data confirms this and the number of pages accessed per visit has also increased.
people do join in by making themselves visible in time when there are topical threads that they can contribute to, the recent polls are a testament to that and there are many recent threads that also have engaged our community..
It is unfortunate that our power posters who have provided human content and discuss human topics have not been as active and. unfortunately topical posts have dropped of perhaps you can now feel more confident and create posts only visible to the community to allow people to join human threads.
We can change this together, but unless people post on topics they wish to discuss or question there will be little visible traffic discussing day to day issues involved with living with CLL.
i appeal to you please all post on topics you wish others to discuss, I think you will be surprised how many are in the wings waiting to share their experiences and discuss ways to better live with this condition we all share.
Hi Nick, Dick, Newdawn, Sparkler, Paula, Neil, Chris, Jangreen, and everyone else contributing to and looking in on this very interesting thread,
I stayed away from the forum yesterday as I was in a very bleak mood, having responded with all too soft humanity to the challenges of living with an aggressive and incurable blood cancer, facing another 5 rounds of chemo, attributing every ache and pain I feel to some insidious underlying secondary malignancy (the possibility of which always lurks at the back of my mind), and feeling a bit overwhelmed by it all in general...
As a result, I missed this really important discussion about online community engagement, and just wanted to contribute my own thoughts, and some insights gained from responses I had from my questionnaire.
From a personal perspective, I find this site on the whole does a pretty good job of mixing the essential factual information we all need to advocate effectively for ourselves and others with the equally pressing everyday psychosocial issues we face. I agree that architecturally new visitors are plunged straight into the current debate, very often at a high level of knowledge and experience, without arriving first at a safe welcoming 'reception area' or site-map to guide them, and maybe that does need addressing if the site allows for it. We can't assume though that the newly diagnosed won't or don't want to learn from highly informed discussions taking place between others further down the road. This is exactly how I started my learning journey, most of what I learned in the early days coming from plunging headlong into the highly informed ACOR site and its links out (which I continue to read religiously every day, but rarely post to).
I'm not surprised to learn from Nick that the newly diagnosed, whilst not posting necessarily, are here (and staying here) in greater numbers than ever before. 'Lurking' is well documented in digital research as one of the most effective ways of familiarizing oneself with the social and knowledge based cultures of online communities. For some, it will always be enough, whilst others will gradually gain the confidence or find points of contact and recognition as their disease progresses or becomes more a feature of their everyday lives, to begin to contribute their own experiences. Not posting really doesn't mean that people aren't finding the site useful. Nor do we know the ways in which those more silent members are using the information they find here to inform their contact with other communities, and by that I mean everything from conversations with their families to discussions with their employers and Doctors. What what we see going on here in the form of online discussions between members is just the the tip of the iceberg. More research needed there then!
In many ways, how effectively a site is perceived to operate by its users depends on its aims or mission statement. Listservs like the ACOR CLL list for example are highly regulated, with predominately social, political or alternative topics discouraged from the main threads which are very focussed in terms of what might be described as 'hard' information (although that doesn't necessarily 'dehumanize' discussion, as subjects such as how to deal with fear and depression in CLL fit this remit as well as discussions on clonal evolution, new treatments, and evolving prognostic indicators and their implications). Although there are clear long-term relationships and affiliations between members, many communicating personally off-site, it is not predominately defined a 'social' space, and it works beautifully to fulfil its very clear aims.
Those sites with more of a social exchange feel to them set out to provide a very different, but equally important kind of community support for the very real issues of everyday life with CLL, one of which can be a crippling sense of social isolation post diagnosis. They are however just as likely to become dominated by particular members or points of view as the more technical ones. This was borne out in some of the feedback in questionnaires. Whilst some respondents did talk about sometimes feeling excluded by high levels of technical information and language or 'jargon', many conceded that this had encouraged them to learn more and become more pro-active members of their own care teams. On the other hand, some respondents were very clear that an excess of largely social exchange or subjectively 'introspective' viewpoints were equally off-putting for them, particularly if their own views on living with CLL differed from the dominant ones in the groups they had been members of (this was a global project, so these comments do not refer to any one group or site).
So, where does that leave us? This disease has as many potential ways of unfolding as the amount of individuals living with it, and it manifests in many ways - from finding oneself curled up in a ball weeping with fear at 4am, to laughing at tales of someone using their toxic chemo-urine to kill slugs at the dead of night, through dealing with unfair treatment at work and travel insurance issues, to grappling with the signalling pathways of CLL cells in order to make informed treatment decisions. There are common themes for all of us, but it is by no means a one size fits all disease, and getting one community to fulfil all of the many needs of those with the many different forms of CLL is a challenge indeed...maybe it isn't even possible, and we all need to manage our expectations of what needs exactly an online community can realistically fulfil for us...or link out to a range different sites and platforms for different needs where they exist...being pro-active in creating or setting them up where enough of us perceive that particular needs are being left unmet and have the will and time to address that....
For me, this community is the one I feel most at home in because, despite some navigational issues (and the frankly incomprehensible approach to tagging mentioned by Chris), I think it does an excellent job in the face of all the challenges mentioned above to bring together the 'hard' and 'soft' elements of living with this disease. I personally have been overwhelmed by the warmth, humanity, intelligence, and knowledge in equal measure of the responses I've had from people here...LONG MAY IT CONTINUE and a massive thank you to those of you who put your time and effort into maintaining this site and continuing to reflect on how it evolves in line with hugely diverse membership needs
Can't wait to see what random tags come out of this one - and I'm not editing them, cos it takes for ever and you have to do it all again when you spot the inevitable typo and have to edit the post!
Love to all ... got my first post chemo bloods tomorrow, so in a state of nervous 'chemo-virgin' anticipation today and will update tomorrow...
Jules thank you for such a thoughtful review of your observations and your take from all this. I Will definitely sit back and reflect on the discussion , for me this is an opportune moment to learn from everyone as we move into our own website development and the implementation of functions and features and links to partners to best serve the community. navigation will be key too.
You'll have to start a thread to create us a few random tags
Good luck tomorrow, thank you for sharing so much with us.
‘ What we see going on here in the form of online discussions between members is just the tip of the iceberg. More research needed there then! ‘.
To now therefore Nick….
Many websites have an anonymous counter to count the number of visitors to the website.
Often this is an extremely simple addition, which the hosting company provides.
If as Jules says the discussions and posts going on are ‘ just the tip of the iceberg ‘ due to the ‘ Lurkers’; then a simple visitor counter will tell you.
This should be a basic requirement for Health Unlocked.
Yes it was kind of Jules to comment about our group's activity here:following my note:
There are more recently diagnosed arriving and staying than ever before the analytic activity data confirms this and the number of pages accessed per visit has also increased.
Jules noted:
"I'm not surprised to learn from Nick that the newly diagnosed, whilst not posting necessarily, are here (and staying here) in greater numbers than ever before. 'Lurking' is well documented in digital research"
Dick I am unsure of your comment, as Admin has access to basic analytics informing us of number of visits. i have published this for you in the past in the newsletter. you may find last months of interest, this is an improvement on the month before and continues the steady increase in activity during and after the upgrade. so we are doing something right
Our community has become a shining example to others on the HU platform..
Just because you can't see what people are doing doesn't mean that they are not using the facility.
The figures for October alone show we had :12,120 visits with and average visitor viewing 3.57 pages per visit
whereas the total for November to April was ; 22,232 visits.
The community activity and use of the facility has more than doubled recently..
I guess Jules's research study could go on for ever but we will try to put together a few polls to allow the silent majority to contribute with feedback if they wish. The last poll attracted the highest number of participants yet at 150, that is still less than 25% of the community membership.
hello sparkler To what are you referring? My comment above? I don't believe we can always be positive ,I guess I mixed my metaphors and should have thanked Jules for her kind words in thanking all who maintain the community site. That is all of us who use it..
I am exploring how to encourage members to engage and share on any level. and consider the community's views to aid our development
Not sure who that comment is actually aimed at Sparkler, but as it appears in this sub-thread in response to Nick's feedback on my post, I would just like to say that, whilst my post does not take the form of overt criticism, it attempts to address the challenges of making a site like this work effectively for a range of members, and is actually informed by a good deal of critical thinking.
Constructive criticism and critical reflection are vital to the life of any community, and I would hope and imagine that everyone else here would agree with that.
I don't imagine that it's my response that you seek particularly, but for what its worth, I certainly regard constructively critical posts - yours and anyone else's, as favourably as anything else that appears here.
My question was rhetorical really, so I wasn't particularly looking for an answer but thanks for your comments Nick and Jules.
I was just trying to reinforce the point that community members should all feel safe and free to criticise and question, without their contribution being viewed less favourably than those expressing positive views.
This entire discussion is underpinned by the principles of everyone feeling able to contribute honestly and that the forum welcomes people's opinions, ideas and thoughts, regardless of scientific expertise or academic interest.
People need to feel, that no matter what they say, they will be respected and not judged.
This is a poll from six months ago which 116 joined it kind of gave an indication of the site make up at that time,But of course true lurkers never joined the anonymous poll and they were the majority.
16 out of the 116 who responded told us they were diagnosed within the the past year. So does this give an indication of how many are recently diagnosed in this community a s a proportion of the community?
Can we guess using 16 0ut of every 116 in the community may have been diagnosed in the last year? Or is the figure much higher?
When you first visit HealthUnlocked - CLL Support Association - you are met with a simple invitation to sign up.
It is well designed.
Next to this is - Latest activity - Latest posts - Latest questions etc .... the initial contact has went from being inviting to being complicated to those who are just coming to terms with this CLL thing ....
I was told when I started engineering drawing that if an idiot on the shop floor could not follow the directions of the drawing then the fault was mine .... I was the idiot. ( I am not implying anything other than that I was SO hard done by as an apprentice ! ) ....To apply the same principle, I think it would be better initially, to have a link in between the initial invitation and the latest activity of those who are more used to the community here.
An example from a church newsletter .... There will be a meeting of the woman's guild on Tuesday, new members welcome ..... where ? .. at what time ? .. what does it involve? Whoever wrote it knows, it has probably been going on in the hall at 7pm for years .... but still no new members arrive.
So why not have the initial invitation leading onto some common questions that everyone asks when they are looking for information or help with this CLL thing ..... some basic ' Active Management ' that is important to us all, what to ask their GP or their Consultant, then inviting the newcomer to input what they would like to know using the added feature of Latest Activity etc.
The community here are more than willing to try and help with anything you would like to ask - there are NO stupid questions ... what about a mention for carers who are feeling worried, helpless.
The invitation to sign up is very well done ... I just think that it should be followed in the same manner with what first time visitors are now having to face up to, be it as patients or carers, and encouraged to join in .... even if it is just for a rant.
I have re-pinned the easy understand introduction to CLL information at the head of the pinned notices to aid early discovery by recent arrivals. please post a few topical posts that you feel would aid in discovery and developing relationships etc. i will pin one of these in prime view to to enable easy entry and discussion for all and newcomers.
I guess we are still very much a work in progress,. Tagging is now at the top of the fix list , I believe search has improved. But am very thankful to all who have come together to aid us connect. Paula mentioned polling on how we can best develop this facility within the confines of our host's capabilities.
This is timely as we embark on creating the new CLLSA website platform that will work as an adjunct better hosting current information resources expert contributors and partners to strengthen our resources here,
Perhaps it is now time to create a separate room for recently diagnosed to discuss in a more understandable and sensitive way the challenges of living well with CLL?.
I think Paula's suggestion of a poll is a good one but no doubt a bit of a challenge to formulate within the confines of structural capabilities.
I think Chris makes an excellent point about the need for a 'safe harbour' Nick and maybe we do need to seriously think about how this could be addressed.
What this site does do well and I think is it's primary function, is to give people the necessary information and current scientific data in order to 'educate' themselves and self advocate in a system that isn't always knowledgeable or responsive. But when newbies or indeed less informed people join, they hit the site at a point of complexity and that must be daunting.
Along with the education and information provided here which empowers us to become strong self advocates is the support and kinship function. Not every problem has a solution or a scientific suggestion. Sometimes people just need to say how they're doing, how they are coping (or not) and to express fears that only fellow sufferers can fully appreciate without creating the distress that loved ones could feel hearing the same concerns. The 'soft' issues that hit us the hardest.
I'm so pleased that members on here recognise the issues and it's not an attempt to devalue the excellent function that the site presently fulfils, it's an attempt to build on unmet need by saying, 'all welcome, no expertise required!'
In all the correspondence above lets not forget the last two lines of what I originally posted......
‘So spread the word, recommend Health Unlocked to friends and acquaintances.’
This first is easy to do, just mention it to your doctor, your nurses, AND to other patients in the haematology department of the hospital when you next visit. Mention the pinned posts for the newly diagnosed...
AND even more important this line :-
‘And to those with some computer skills, take some time to help out others recently diagnosed.’
CLL is mostly a disease of the elderly. These are often the people with only basic computer skills and they might appreciate a little assistance.
Dick
Good post, interesting and some indication of the problem that we find ourselves discussing, is that the replies are all from regular contributers. There is no easy answer.
Like many before me I was so pleased to find this site and be welcomed. Then I began to understand more and looked for more information which was readily available, but, and its quite a big but, I started to be overwhelmed by the amount of technical material available. At this point I backed off a bit and just posted where I felt I could help. I am a relatively confident old person so not afraid to say I need to reread many of the posts, listen again to video clips etc.
I still do and cannot pretend to understand it all, but it's only through this shared information that I and others who want to understand this disease learn. It's unfortunate in a way that we are unable to drip feed information, but it's clear we come to the site at diverse stages of CLL so one size will not fit all.
There was a site now closed that had a cancer forum, mainly it was just a support forum but was used by people reaching out to others, encouraging, sharing histories, and where needed sympathising with each other. This site was abused and it closed.
The present set up will not facilitate such an addition, so perhaps all we will be able to do is support when needed and provide help when asked for. I think that our administrators and contributers are doing the best of jobs they can within the site limitations, and providing much needed and uptodate information.
Perhaps someone much smarter than I will be able to come up with an idea that helps.
Still on the lines of making the site more user-friendly...
1) Earlier I mentioned problems with abbreviations and initials, but it would be very tedious for people NOT to use these, especially the very common ones (eg WBC, and Hb). Could we have an easily accessed "glossary", explaining commonly used words, phrases, abbreviations, initials? (Maybe there is one somewhere, but I haven't noticed it).
I realise people can Google such things, but it is a hassle, and sometimes Google throws up unexpected things. I just tried googling WBC and the top of the list was a packaging company, followed by the World Boxing Council.
2) The scientific articles are very important - a big part of what we want to find here, and we don't want to miss out on them. But explanations of the language (eg in a glossary), or a summary of the main points of the article (which people do often add) is also very helpful.
3) I know there are many reasons why people need to be anonymous, and have an avatar pic rather than a real photo. And that is fine. But if more people felt they could use their real photos, the site might look a bit more "human". (I guess I wouldn't mind putting a real pic in of myself, but because hardly anyone else does, I haven't done either).
4) Maybe some of the different expectations that people have, are due to a bit of a male/female divide. I know this is a generalisation, and not the whole picture at all, but more men get CLL than women. So there are probably more men on this site than women. Men tend to be more factual and scientific about things - less wanting to share feelings. Women are more likely to come to the site looking for people to relate to, social interactions, emotional support (as well as factual info). This could be part of the reason the balance sometimes comes down more on the scientific side. I may be completely wrong in all that, but it was just a thought...
1) It's amazing how we sometimes overlook the blindingly obvious. We don't want the number of pinned posts to be overwhelming, so to me the obvious place to look for a glossary is in the International List of CLL Information Resources
2) Takes time to do, but is very important for several reasons, including:
a) Readers can quickly decide whether the additional information is relevant or interesting
b) The post will be easier to find in a subsequent search
3) Having a 'selfie' photo would certainly make the site more personal and I've been tempted to do so myself, perhaps even briefly. Perhaps those that have retired and don't mind being publicly identified with having CLL could consider doing this - but you can't go back!
Interestingly the word 'selfie' has just been added to the Oxford English Dictionary and is the OED word of the year. OED state that the word originated a decade ago when an Aussie that had had too much to drink, fell and split his lip, then took a self portrait and published it on an on-line forum calling it a selfie.
Yes, the Tee shirt : I'm U.G.L.Y. I need help! certainly does invite enquiries from potential sponsors. This is one of the successful fund raising events where bartenders (What is it with this continuing theme of Aussies and drinking?) are encouraged to compete in a fund-raising effort to support locals with leukaemia. This event even has its own website:
Thanks Neil, for replying to all the points I mentioned. ( I wasn't expecting that). It was very interesting to follow the links to various glossaries and dictionaries. (The article on "Selfies" was fun too). But can some of these glossary links now be made more accessible from all HU pages?
I like the way Chris's Cllcanada site has one simple menu bar along the top, with all the main categories easily visible from the start (including glossaries), and sub-menus that drop down when you hover over them . So much easier to navigate than HU. Couldn't HU do something similar - make better use of their purple menu bar by putting more key items there (there is plenty of room), with drop-down sub menus? That would save the need to scroll down the right hand side, searching through pinned posts and categories. (I realise there is "work in progress" at HU, so maybe that's already been suggested and being worked on, as part of their "improved navigation plans").
I realise these are technical things and don't address the issue of the site being more human. But anything that makes it more user-friendly will surely help.
There's plenty of space for improved navigation on this revamped site, so hopefully HU will use that in their planned design changes to improve navigation, etc as you noted.
BUT...
There's nothing stopping anyone from using the Feedback category in Email Support to suggest improvements! Don't assume someone has already suggested it - they probably think you've done it too and an opportunity gets lost...
As you say improving site user-friendliness will help, but membership in this community grew after the upgrade despite extremely challenging technical issues, which just goes to show that the human touch is far more important.
I have just used the Feedback category in HU support, as you suggested, Neil. (About navigation stuff, and especially the need for an easily accessed "glossary"). I expect someone else has said the same thing, but it still seemed worth a try.
More on the work in progress by the HU development team:
The current improvement priorities are:
1) A better tagging system for questions/posts
2) An improved implementation for members to list their Symptoms and Treatments in their Profile
3) Improved navigation that will make the site user friendly for new comers and recently diagnosed.
There's also the improved indication of when posts/questions are private to this community, but I'm not sure where that fits in priority wise, given the temporary fix is in place.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Slowly healing cuts - does honey offer some help
Waitrose and vulnerable customers
14 day quarantine from child who has received live flu vaccine needed? 
A thought for the new year
