We want to talk about the Topics feature in the communities. Its use varies quite a lot across HealthUnlocked. Some communities have many, many topics, some have a handful, and others have none at all. In addition to that, users don’t seem to assign topics to their posts as frequently as we’d like. In fact, the vast majority of communities have less than 3% of their content assigned to a particular topic. Consequently, they don’t fulfill the purpose for which they were designed: helping users to discover the content they’re most interested in.
How did this come about?
The experience of our users and partner organisations are at the heart of every development we undertake, and the specific reasons we’re focusing on this now are twofold. First, as the platform and communities continue to grow, so does the amount of content and discussion. As a result, it’s become easier for a user to miss posts that have high relevance and value to them. The second reason we’ve started thinking about this is because we have some organisations that want to cater for segments of a disease, not just the disease in general. They either are, or are considering, starting whole other communities for segments of their audience; say, a community for severe asthma, another for parents of children with asthma, and so on. These segments have unique issues, but they also have a great deal of overlapping concerns - it’s important to strike a balance.
We thought with 1. the lack of uniformity in the way topics are used and 2. with the issues of disease segments and missing content, we could potentially bring something better to the community by re-imagining the way topics work. We want your thoughts.
A possible way forward
Here’s what we were thinking: what if rather than being able to add 20 topics to a community you could only add a handful of carefully curated topics and what if instead of picking anything to use as topics you implement them in a way that helps segment your population better (think miniature community threads within your larger community)?
In the example above that could mean you have a community for asthma and topics for severe asthma, parents of asthmatic children, treatment discussion, etc.
Perhaps for others it could be symptom management, treatments, diagnosis, general discussion.
What if selecting a topic was mandatory for users and topic threads were surfaced in a more obvious way?
One of the benefits we see here is that some communities are very large and by making broader segments more manageable you make it easier for users to read and engage in the topics they’re truly interested in. Maybe in the future we could even remember which topics they navigate to most and take them straight there…there are many possibilities, and that’s why we want your view.
How would you like to see the topics feature evolve? Given our thinking, what do you think may work well and what do you have concerns about? How could Topics work better in your community? Sound off below!
Written by
amcm
To view profiles and participate in discussions please or .
In Memory Health, I would like to see a topic of LIghter Moments as each of the topics seems to be focused on the darker side of the issue of memory loss; I am happy to see this post as members of that community and I have worried how to go about changing topics.
This may be meddling in format, but could we in CLL Support Association have titles that are smaller, similar to what you show for "New feature"? And with that change, maybe place any topic above the title in another, next sized down font or italics or screened as is at the bottom of some posts.
I know this is not helpful for the topics breakdown, i need time to think around the foggy brain I am sporting.
I appreciate your openness to suggestion and hope to be of help.
Hi 'mrsmummy', The only way I can see Topics becoming clearer for BLF Community is by having separate disease topic areas - but then there will still be much that is general to all - eg. many lung diseases have some using oxygen or having spirometry/lung function testing etc - so it's hard to envision a good/clear way of separating issues. That said, having a 'behind the scenes' advantage, you might have a better idea as to the pros/ cons/issues that might arise. I do think the social aspect matters a lot - I guess because many of us are partially if not totally housebound and quite isolated, so 'places' like HU become increasingly important. I think it will be a hard ask to separate areas while keeping the social side of things together.
On my main forum (Thyroid UK), I often post about various research or generally academic papers which could be of interest. For that, we have the "Research Papers" topic.
We also have a "Pregnancy" topic.
Where do I put a research paper about pregnancy? Given only a single topic per post, I find it difficult to decide.
Perhaps we need the ability to set more than one topic?
I find it very difficult to see how we could split the topics of thyroid. In the past we had many pleas to separate hypothyroidism and hyperthyroidism. Trouble is, sometimes the same medicines are used for both, hypothyroidism is frequently the end-point of treatment for hyperthyroidism, periods of hyperthyroidism are common in people who are suffering the most common form of hypothyroidism, some people are confused (to begin with) about which they have, and there is much in common with any deviation from optimum thyroid hormone levels in either direction.
It might be sensible for topic(s) to be visible on-thread. That would raise their profile hugely.
Dear acme,
These ideas arose from a discussion on the CLL site. Members are delighted to have the site, but as it has grown it seems unwieldy and some refinements could be made.
1. When people sign in for the first time they are given information about the site and how to navigate and post.
The lack of members not assigning posts to topics is due to a lack of information and direction and not to lack of interest.
2. I would structure topics so that they mirror the development of CLL.
I imagine that many members join because they are newly diagnosed with CLL. They want information and reassurance.
Suggested topics: What is CLL
Newly diagnosed?
Watch and Wait
Symptoms
When does treatment begin?
What do blood test results tell us?
The next big section would probably be: Treatment begins
Types of treatment
Different paths of CLL
Deletions,
Blood transfusions
Remission
When the treatment does not go to plan, etc.
Catch all section: Vitamin supplements
Flu vaccinations, shingles, herpes
Travel insurance
Members could improve and develop a fuller list with catchy titles.
3. Perhaps before posts, there could be a summary of information for each topic.
4. The posts are valuable because of the personal contact. When an illness based on so many numbers and figures the sharing of experiences and mentoring is empowering for everyone.
In order to keep the posts manageable I would suggest, in some circumstances, pruning. Perhaps after 3, 6, 12 months some general comments (good luck, best wishes) are removed and valuable comments are summarised and added to 3.
Perhaps members can be asked after a certain time if they and their posts are still active.
5, finally, I would set up a topic site for each illness HealthUnlocked covers to ask members for their suggestions and contributions for their site. Involving the members keeps the site strong and enables us to give something back.
A couple of days ago I received a notification that my preferences for receiving posts had been changed. I asked whether it would have been better to ask if I wanted my preferences changed and for what reason had this happened. No answer, yet.
Peter, thank you for your considerable efforts in trying to improve the usefulness of Topics for the CLL Support community and sharing that with the wider gropup of over 900 HealthUnlocked communities. Sadly, not much feedback from other communities has been provided to HealthUnlocked in response to this post, despite it being highlighted under each community post all across HealthUnlocked.
I would encourage all members to give some thought to how we can greatly improve access to relevant posts by sharing your thoughts in reply to this very important post.
If we don't take this opportunity to respond, all of us will continue to lack easy access to the hundreds of thousands of excellent posts previously provided. We'll just keep pouring millions of hours of collective effort into a black hole...
The CLL HealthUnlucked site is excellent at providing friendly, interactive support to the vast majority of its members. Perhaps the feeling is extending and changing the boundaries may have detrimental consequences. If it works, don't fix it.
The only concern I would have about the Healtunlocked site not adapting to the comments of a minority of interested members, experienced administrators and volunteers is that the site may stagnate and become dated.
Increasingly, I have looked elsewhere for information and perhaps others, as they seek more answers to their developing CLL, have, too.
In terms of a well-organised, freshly presented site I would suggest looking at 'Dr Sharman's CLL& Lymphoma Blog'. This is mainly information based. He has good solutions to the issues of selecting topics and accessing archives.
Could Healthunlocked use a format like this, while remaining a friendly forum?
Thanks for your time Neil and for your posts on other matters.
If I am honest I find the topic system redundant and untidy. You are trying to bring an organisational system to posts without any structure being in place. Makes more sense for admins to define a heirarchy for their community and then allow users to page their post on the correct area and allow admins to move any that do not fit
Other forums and systems have been here before so why invent a poorer version.
This discussion has been going round in circles for at least four years.
It is easy to post. No topic is needed. Why would most members have an opinion about the adhoc topics they do not use?
But the ease of posting without selecting a topic leads to a proliferation of unsorted streams and posts.
I assume there is some organisational resistance to change. Who is has the power to discuss and implement change and innovation? It probably is not the members, the volunteers or the administrators. Can there be a vote? Is money a factor in updating?
The iPhone app as link to pinned post at top of page, no topics as yet.
A solution would to put a link on the tool bar below the banner. So it appears on every page.
The number of topics would be dependant on the diversity of the particular forum.
There are some that can be removed or included in other topics.
A bit confused here - As far as the British Lung Foundation community goes it will need an awful lot of topics - firstly there's the numerous lung conditions it covers - Asthma, Brochiectasis, Sarcoidosis, Mesothelioma, Pulmonary Fibrosis and Idiopathic Pulmonary Fibrosis, Lung Cancer, Chronic Obstructive Pulmonary Disease (which is itself an 'umbrella' disease with sub divisions). There are more lung conditions - I'm sure I can't remember them all - and each of those diseases has many issues. There is also the tendency for the BLF community (and I'm sure it's not alone here) to be a social group as much as anything else. So in short you may well need 50+ Topic areas for the BLF community. From the user point of view things are quite straightforward already - you simply use the search option to find specific subject discussions if you want them.
I guess it makes it easier for Partner Organisations if posts are arranged in Topics......then they can just click on the ones that interest them.
Personally though, I just skim through the headings and read those that interest me health wise as I have both asthma and COPD......and the posts that give me social support as well.
I also have problems knowing which topic heading to pick when I do write a post .
For a while (6 months), keywords categories could have a way to type-in a keyword. Current categories in Parkinson's Movement seem too constrained, too generic. Informative patterns might emerge as the many typed-in words are evaluated.
I am a member of the Fibromyalgia community. It would be good if people were made to chose a topic and that post goes automatically into that section then say new people went straight to a introduction, another one for people requiring help and support, another for light chat so according to what a person needs from a site they could go straight to that section. Our community is so large and there are so many posts each day if you have limited time it is a real struggle to scroll through all the posts to see what is of interest to you. At the moment the headings don't always tell you straight away what the post is about. I tend to go on each day for a limited time to try and help others but now I am going on less and less because of this problem.x
Instead of an alphabetical listing of group names, why not group them by illness. Starting with the Brain, Then Pituitary, Thymus, ears, sinuses, and throat, Thyroid, glands, ets., down through the whole body.
Being a foreigner, I maybe don't understand completely what you mean. What I miss, is more about the different bone marrow cancers and subtypes of leukemias. I have been diagnosed with cmml-1 for almost 2 years, and the diagnosis was changed to Myelodysplastic syndrome type 1 a few weeks ago. i don't find anything about these diagnoses here. Ir seems like these diagnoses bring on quite a few autoimmune diseases in me too, like ITP, polymyalgia rheumatica and some lung problems ( bronchiectasis and dark spots, not tumour suspected)
I agree with the poster who has stated that there needs to be structure and organizational system to the site that automatically sets the Topic list.
Not something that is easy, even in the age of the computer (and it does take time and money to program).
It is particularly difficult to find specific links that are embedded in given postings. Many of those links are quite new and important to have available. A member may not need the specific link at the time it has been inserted in a post, but with the disease of CLL, one never knows when that info might be the very thing needed.
The system as it is depends on posters to choose from a set of topics that don't always fit the subject or question being posted.
Perhaps a brainstorming session for volunteers and admins along with an assessment of the already numerous postings and the knowledge gained would help? Sorry, after I typed that, the hours of work that would take away from the valuable sources that our volunteers and administrators provide, flashed through my mind.
Is there not a program (or app) and the money to purchase and install that can do the sorting?
Please know that the site is of tremendous value to me. The interchange of views and experiences makes a life with CLL less of a burden. The proverbial shoulders we can cry on and virtual hugs we receive and give do not need a topic. The knowledge gained is inestimable.
I guess not knowing what tools you have at your disposal to use to make Topic designation an up-to-date electronic operation, leaves me blank, because I go back to pencil and paper, a chalkboard and a room full of people hashing it all out. That makes me stop in my tracks and boggled of mind.
From my personal experience, I use Health Unlocked initially as a place to chat with others, rather than as a source of archived information. In fact, I rarely look at old posts. I mainly use the NHS Weight Loss page, as I now know several of the participants on that page, and enjoy the lively, current conversation that goes on. The topics are bit of an afterthought and I often forget to choose one...maybe they should be chosen before we post rather than afterwards?
Reflecting further on this issue of topics, one of the main reasons for using topics is to be able to identify relevant posts.
The single biggest and most important thing HU could do would be to have an adequate search tool. That could exploit topics, and allow ordering, date ranges, etc. I can't even find my own posts - trawling through 1002 posts serially is a very bad joke. Nor is it very helpful trying to find a post within, say, the topic Hypothyroidism of which there are 9,496.
I believe I might not be the first to have asked for this.
search engine and some guidance that is easy to access.
use the ncbi site a lot for searches but have never really got my head around how the search engine (which is really powerful works) so often end up wading through a load of stuff, or trying several different searches before I get to what I am actually looking for. Can be the same on HU ... and it can be confusing the way the search will sometimes be within a specific community but at other times seems to pick up other communities.
When I type "cobalamin" into a PubMed search, some fancy software looks that term up in MeSH and changes my search into:
"vitamin b 12"[MeSH Terms] OR "vitamin b 12"[All Fields] OR "cobalamin"[All Fields]
On its own, that wouldn't be fantastically useful. But the indexing side has already associated occurrences of "B12", "vitamin B12", etc., in other articles with the "vitamin b 12"[MeSH Terms] - so you find things which are not exact matches but are relevant.
In particular, it helps to ensure that differences due to grammar don't fail to get found. For example, "injection" and "injections", the simple pluralisation, would cause an HU search to fail.
Many years ago, in my job, we had a database of software problems. That had a tightly defined limited vocabulary. As you grew more familiar with that vocabulary, so you could more accurately define searches.
Are topics the subject words which are kind of randomly chosen when you make a post? It would be nice to be able to edit/correct these. I've noticed completely irrelevant or incorrect words associated with some posts I've made.
Ah. I have learned if you want your post to be retrievable it's a good idea to start the title with key words related to your topic, or it can't be found with the current search function. So I echo a previous suggestion, that improving the search function could be most useful.
On BLF lung issues, following suggestions:
Lung Health:
COPD
Bronchiectasis
IPF & Other Lungs
Medications
Lung related or Health other?:- Anxiety Depression, Reflux,
Stopping smoking
Personal Blogs lungs
End of Life discussions
Those Departed
Help Available:
Benefits Discussion
Help as we Age Organisations support etc
Helpful Tips & links etc.
General:
Chit Chat anything.
Health Other (
Personal blogs Arts Crafts, hobbies etc
Humour as is
Recommended Holidays
Or I guess to make it simple generally Tabs across the top of the page on each Health board like:
Discussions / Medications / Help Available / Questions / General
Each area with brief description.
Example..............
Discussions - discuss lung related here
Medications lung health related
Help Available - Benefits organisations, contacts links
You already have related posts so why not use Topics as a forum for professional advice, articles. etc, A drug interaction checker would be useful for many. Also a dictionary of general medical terms especially as we are international.
I find most of the communities I use have too limited a range of topics so I often end up putting it in 'no topics' instead. Or I find the topic confusing as to which belongs to which.
If all communities had a 'general chat' or 'other things' it would be better. x
On the weight loss forum, we currently have 31 separate topics, as we try to make things easier for people to choose the most appropriate. This doesn't always work and we're currently trying to sort out our 'filing' system.
Is there a limit to the number of topics available and could we have the option for more than one choice, for cross-referencing, as there is often an overlap?
Thanks for continuing to make the site more user friendly
We have a limit of 20 characters for topic titles, which often means that we can't apply titles that adequately describe the content. Is there any way that this could be increased, please?
This site has been really important for my own learning in relation to my thyroid issues. Within that context I would say that there are many requests from people asking for help to decipher their blood results. This seems to me to be a starting question for their own beginning understanding of their thyroid journey, as it was for mine. The responses too, are often repeated as I would expect. So, perhaps in relation to the topics, and I am sorry if this has already been suggested, something like "you doctor has asked for you to have a blood text, so what does that mean?" I realise that this then cause a wide spread between those who have knowledge and those who are just beginning, but as I said, many of those questions are beginning type questions. Perhaps that should be the starting point?
How about letting all your followers know about the benefits of using Low Dose Naltrexone for many health conditions including fibromyalgia, pain, autoimmune conditions, ADHD, autism and many more. This is a topic that many patients have never heard of as Drs and Pharmacies cannot make money by patenting it. This is an effective and inexpensive but rarely offered. Information is power lets empower!!
Thanks for the chance to give feedback. Specifically about the CLL site, how about starting simply? Just very basic structuring to start with and see how we like it?
I think topics are very helpful way of finding relevant information on the subject.
I am in favor of having a longer list of topics to be more specific and therefore able to find relevant information quicker. For example, topic "symptoms" can contain just about anything, while specifying each most common symptom as a separate topic may be more helpful generally.
It is harder to scroll through the long list while picking the topic though. So I guess the list shouldn't be too long to make it manageable.
I would be in favor of having topics as a mandatory field.
I wouldn't want to divide communities into sub-forums. That could create more of a division. Although for some big communities this might be a good option, I guess.
I thought topics were defined within a specific community. As such it would always be possible for an admin to amend a topic or ascribe one if not ascribed by the original poster.
I really wouldn't be in favour of a system which forced users to create posts within given topics as I have to say from past experience as a user in those types of forum that the logic behind which topic what got posted in confused me and put me off using the site.
May be it would be useful to give users the opportunity to look at posts within specific topics - though I think that is already there through the topics list.
Would the ability to put in an explanation of topics and how to use them that was specific to the forum help?
With regard to forcing posters to choose a topic, I would expect HU would code for a default (e.g. 'None of the above') to always be present. The current situation where 97% of submitted content is not readily available to those who want to look through posts covering specific interests is a woeful outcome of not requiring posters to select a topic...
As a both a sufferer and ex Registeted Health Professional I think theres an easier way to do this.
I think to make sure we cover ALL relevant topic in each community a little trick I used at Uni to adress all relevant topic in a subject can be used. Basically use the major titles of a teaching book (for prifessionals as they are reliable and cover all topics) on the illness.
Therefore it would cover
Illness A
*Definition
* Diagnosing it. VERY IMPORTANT as prety much all newly diagnosed have no clue which health professional to turn to. Ie Fibromyralgia is a Rheumatologist.
Main Different Sub Types of That Illness A:
* Sub Types ie Types of Migraines or Diabetes
Main Treatments: -*Medications *Therapies (ie physio or pain managarment as opposed to Tramadol, ect ect ect. Or instead of covering every therapies especially as new ones pop up every few Yrs.
Support System ie *Own: family, friends where reliable as in Mental Health Forums due to isolation that may cause or occurs following illness
* Main Support Groups ie Samaritain, MIND, ect taking into account different country issue
GREIVING
PLEASE, please add this to EVERY community as every individual who développé an illness looses something from sense of self to mobility ect. The forum dealing with mental issues will need key step of grief. Others just greiving and coping will do. This will cover fear of conceiving in some STI in Sexual Health communities; Lost of self expectations in Pain cimmunities;
Perceptions and Myths:
need to be and as it affects everyone. Ie "being dirty" in Sexual HealtH, "being lucky they don't work" in those with deteriorating health in Chronic pain, Fibromyralgia, Mental Health communities.
Humor in EVERY community. We all know we need it.
Research in every community
Survey
Thoughts & Feelings: in EVERY community as we all need to vent
Social Chat:
in EVERY community as we all just want to natter at times ie new baby, move house
Legal Matters: in ALL communities as if affect all of us from care to work entitlements
This way each community will have covered everything that relevant to each of them. The more straight forward the condition the shorter the list, ie Migraine, Sexual Health. The more complex the longer the list, ie PTSD, Fibromyralgia.
Hope that was usefull. 💗
Blessings.
PS Forgot Aids/Equipment ie Whelchair in Fibromyralgia, insulin Pump in Diabetes. Probably miss other stuff too. Sorry. 💗
I think in many communities different illness headings would help i.e in BLF we have many different illnesses that are lung diseases but require a different approach both to support and the treatments that might help. Arthritis and pain are another area that has varied support and treatment advice according to cause of illness and pain. Stress is another topic for people with ongoing life shortening illness or long term chronic illness. But please keep some of the lighter topics needed to detract from the illnesses especially for those who are housebound. Maybe a general advice section for things like benefits, housing, local support groups, carers groups ect. on each community.
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.
Celebrating Success: HealthUnlocked Achieves a Remarkable NPS Score of 85.91!
Coronavirus (COVID-19): support is always here