A plea to the PSP Assoc for an improved forum.

[Kevin_1]

The PSP Assoc. has achieved amazing things for such a small organisation. They have raised the profile of PSP in the U.K. clinical world, they sponsor research, they have a superb advice line, good articles in their site and local reps who give advice and will even turn up to clinical meetings in some circumstances. The new website is fantastic too. Superb presentation , easy to navigate and great content.

However I really do think they are missing a major opportunity with the forum.

They could do a lot more with the Web. Just for the trouble of getting the right software (which can be free) and looking at how it could be integrated into their rather static website. Integrated every click in the forum is a click on their website which moves them up the search engine rankings and gives them a higher profile.

Forums act as a conduits bringing 'traffic' to websites. They make sites dynamic and good places to be. It is the difference between a library and a busy community with resources. All of this is very 101 level Web management.

Currently the right hand side of the forum home page is barely used. There is a column there which could have links back into their site or to other important places for advice on PLAs and CHC. The forum is so poorly integrated into their site I find it easier to open another tab and go in through their front door rather than try to remember where to click to go directly.

When I look at threads like the one below I am awed at how much help we have given one another and of the primacy of the forum as a source of information and advice.

healthunlocked.com/psp/post...

Yet the forum seems to be a stub left to carry on its own way.

I am not seeking that the forum change in any way or that it becomes a different animal. It works. Better (free) forum software integrated into their site would be no different to use. It would not require anyone to learn new skills. In fact it would be more friendly and easier to use.

H.U. is made to be deliberately clunky. Difficult to search (use Google and add Health Unlocked onto the end of you query - its very effective). This is likely done so that we keep posting the same questions and repeat the same answers. That way H.U. keep getting fresh data which they sell. Their core business is selling the clinical data which they accumulate from forums and the odd spoof questionnaire such as the one recently pretending to be a needs assessment tool.

Modern forum software would be easier to use and it would not require us all to re-train. I know there is concern about that.

In terms of additional costs to the PSP Assoc. I wonder if they might approach an I.T. department asking if there are students who want to take this on as a project gratis? It would be ideal for them.

Well those are my thoughts.

I would love to hear others views.

Waiving to us all.

Kevin

[Satt2015]

Great post Kevin! I need to give this a lot of thought

Hugs x

[NannaB]

Brilliant, it’s back. I couldn’t get it this morning after reading it very late last night. Will read again and inwardly digest.

XxxX

[Kevin_1 in reply to NannaB]

Your thoughts on it would be be good too

XXX

[NannaB in reply to Kevin_1]

I need food so I’ll read the new version after lunch. I don’t concentrate on an empty stomach.

XxxX

[Heady]

Hi Kevin, I think we all ought to remember that HEALTHUNLOCKED is nothing to do with the PSPA. They kindly put a link on their web page for us.

Lots of love

Anne

[Kevin_1 in reply to Heady]

Thanks Anne

But when I spoke to them last I think they told me that it is they who delete the unacceptable posts. I might be wrong on that.

It would be good if it were in house for the reasons I gave.

But I am one voice. Many might disagree.

Warmly

Kevin

xx

[ketchupman in reply to Kevin_1]

Good points Kevin. I’ve been ragging CurePSP to get something like this forum or help sponsor it. They have finally decided to go with Smart Patients. It’s ok, but it has its faults too. I’ve only made one post so far to help them kick start it and have responded to about a half dozen others. I need to initiate a few more. My last one was on gadgets for making it easier to live with PSP. Take care.

Ketchupman

[raincitygirl in reply to ketchupman]

Hi K;. I've checked in to that site too - but its lacking something, even though it appears to be more sophisticated tech-wise. Not sure what it is, but it has a sterile feeling for me. I also don't care for the forum moderator idea (no offence to the lady personally - she's fine - I just dont like the high-school feeling....)

Anne G.

[Kevin_1 in reply to raincitygirl]

Hi Anne

Thanks.

I've not checked it out yet. The best moderated sites I come across have invisible moderators. It's very difficult to moderate by posting without creating a sense that the site is policed.

A good and more modern style is to post a set of guidelines of required behaviour and to delete posts which do not abide by them leaving in their place a message saying the post did not comply with them. That keeps personalities out of it.

This forum takes it one step further. They just delete the post and sub posts naturally go too. It works very well IMO.

We have an incredibly positive forum here. I have never seen the like.

For me it is a good place to visit, to give and to take. It has been a lifeline for us.

1.00 am? I will try... Ugh!

[raincitygirl in reply to Kevin_1]

I agree there isnt another forum like it. It may be a happy accident of the people who've joined..but I have to credit HU with some of the "feel". But I do like the type of moderation you describe; effective but unobtrusive.

PS: Don't lose beauty sleep for that webinar! Register then just watch the recording...

Cheers!

[abirke in reply to ketchupman]

Does CurePSP still have the live chats? I could never get in them and or it would be at the wrong time that's what brought me to this forum.....Did you say you were a representative of CurePSP....congratulations....it sounds like you and Kevin could really work together for a better communications within both sites

[ketchupman in reply to abirke]

Hey Andrea! I don't think they have had any recent webcasts lately. I've reminded them that they should, as I thought they were generally very good and if you showed up during the actual webcast, you can ask your own questions following the presentation and they typically answer most of them. But if you can't make it, they also keep them available for later viewing.

I became active with CurePSP several years ago, shortly after Kim was diagnosed with PSP. I serve on the Patient and CarePartner Committee, which looks for ways to assist both the patient and their caregiver in dealing with diseases such as PSP, MSA, and CBD. We also help arrange the brain donation fund.

[Kevin_1 in reply to ketchupman]

Strength to you.

[abirke in reply to ketchupman]

Hey Dan That is so cool that you work with CurePSP...I think trying to get on the webcasts was probably more operator error than anything. B gave his brain though CarePSP; who was thankful but never extended their monetary promise so as to pay for my husband to go to Little Rock to the Medical Examiner...But I just kinda forgot about it .....It wasn't enough to lose more tears about and we did it not for money but for research and they just added it to funeral cost I believe......I feel horrible even telling you my little experience/////

Take care

Andrea

[ketchupman in reply to abirke]

Oh my. It was probably a paperwork issue. Pretty sure we have plenty of funds, although there is a cap on how much they can help fund. I think it was somewhere between $500 and $1000. Our group meets next Tuesday and I’ll bring it up. Thanks for letting me know. DAN

[ketchupman in reply to abirke]

Hey Andrea! Just got off my monthly CurePSP call. I asked about having future webcasts and they said they would look into it. Others chimed in too stating they thought they were worthwhile to conduct. It’s just sometimes they have difficulty arranging speakers to host. I also inquired about your issue with the brain donation fund. They were surprised to hear of this and the person who handles didn’t recognize your name. She asked me if you submitted the necessary paperwork for reimbursement, which I assumed you would have. They only reimburse for a portion (I think the person doing the autopsy) and they require a receipt. They asked me to have you call the lady who handles this directly and she can assist in getting it processed. Her name is Joanna Teters and her number is 347-294-2871. Hope you’re doing well. DAN

[abirke in reply to ketchupman]

Thanks Dan. Yes I filled out the forms but it'll be a year next Monday...Maybe they just sent it to the Medical Examiner. I do appreciate you looking into it though. I hope they can work through the obstacles of providing the webcasts....I'd rather it be difficult than not at all...eh?

Thank you for concern and support I hope you are well....still raining here...be careful what you wish for eh?

Andrea

[Kevin_1 in reply to ketchupman]

Hi Ketchupman.

Well done!

I will go and have a look.

I do hope we don't loose all of your lovely wise voices here though.

Best to you

Kevin

[Kevin_1 in reply to ketchupman]

Hi again

Wow - they got active quickly - great!

Yes, theirs is a simple GUI too.

At least they have "Save for later" which serves as a bookmark on key posts.

I shall pop in from time to time.

Thanks

Kevin

[NannaB in reply to Kevin_1]

That’s what we need, a “Save for later”. I’ve just remembered I hadn’t read your revised post. To find it I went into your page on the find people near you section. I do go round the houses a lot to find things sometimes but usually get there in the end.

I’m not very tech minded but what you said made sense....................... I think 😀.

Keep on posting and I’ll see you soon YEH!

XxxX

[rriddle]

As with CurePSP and Smart Patients, I assume that really the PSP Association doesn't really want anything to do with the time or costs associated with hosting or managing a forum.

These are the main alternatives:

brainsupportnetwork.org/sup...

I say "main" because we haven't listed all the itty-bitty groups or the largely inactive groups.

Robin

[Kevin_1 in reply to rriddle]

Hi Robin

Yes, I think you have it in one.

Managing a forum like this is actually easy. A few volunteers who are well briefed as to moderating. Job done. This forum has only required a moderator to step in once every three months or so. I have moderated on forums and indeed had my own website with a forum. What goes on here is so easy to manage. No work at all.

Costs are a big concern, but they could be almost zero. So that is a fear, but they may have not an issue.

I would say again. Organisations spend years trying to get their forums established because it is so important to creating a vibrant active Web space and it drives traffic.

Traffic (the term used in IT) feeds the website. The PSP Assoc. have one ready made, but it is separate from their main site and so they are really missing out a lot.

Let me put it this way. They have a superb website now. A really great one. Its like a shop at the roadside. People can find it. A forum is like building a main road into the shop with added community facilities. Chalk and cheese. This is basic web knowledge.

But as you say, those are probably their concerns. Also I posted here so that people could have their say. It maybe that no one wants change.

So be it.

Best to you

Kevin

[rriddle]

Completely agree with what you've said. I know that cost was an issue for CurePSP in hosting its forum.

I am a member of many online groups and the moderator of a few. Each has pluses and minuses. The best, in my opinion, is the FTD Support Forum. The software is by XenForo. I am not sure what organization pays for the hosting.

In general, I have found that its the members who post who give the online group its value (or lack thereof).