A new digital lease of life!

[fraserc]

Hello, I'm Fraser. I'm the new marketing and PR manager for the Pituitary Foundation.

I've been tasked with bringing the website and our digital services up to speed. I'm looking forward to working with the team here to build a useful platform for all of our patients and anyone interested in pituitary conditions. There are a lot of changes being considered, and I'd be very happy to hear from you if you have an opinion.

What would you like to see more of? What works for you? Any thoughts welcome.

The forum is being considered too! We'd like to see the forum busy once again and to that end we're assessing our options. We might go for a new, fresh forum. We are looking at webinars, Q+A sessions, moderation issues and other ideas. Again, it'd be great to have your thoughts.

You can email me at fraser@pituitary.org.uk.

Many thanks,
Fraser

[Carl]

Good to hear from you Fraser, I'll drop you an email with some thoughts....

Cheers, Carl

[plum]

hi
would be great to see the forum more active. i know that i have found it very useful at times. but there are often long periods of silence. perhaps because there are relatively few of us with pituitary conditions? or that people are trying to just get on and forget they have a problem? don't know but looking forward to seeing the proposed changes.
good luck!
plum

[fraserc]

Hi,

I've already had some good feedback and more will be great. I think we might as well stick to the forum - let's have an open conversation. No point in taking more chat off the forum! The charity has been growing recently - it's added four new posts and we will be working hard to raise awareness, and to raise funds to support our work. Therefore, the forum will be very important.

Some interesting conversation points:

Our website gets around 40,000 users a month - which is pretty good. Most of these are from the USA!

I think perhaps a forum could be a great chance to build a community which can share and support each other. It would also be great for us to have a stronger voice for our work. By being able to build momentum on topics on a forum, we can work more effectively.

An issue for us is that at the moment only Pituitary Foundation members can use the forum - if we open up the forum we can potentially have a worldwide community. Would that be good?

[Carl]

Hi Fraser, reply copied from my email:

I visit the forum most days but it is a very quiet forum. I am also a member of the Addison's disease self help group and by contrast their forum is very busy and vibrant. Inevitably you do see a lot of the same subjects come up time after time, but having someone on the forum who has been through what you've been through is very powerful and people find it really beneficial to realise they are not alone.

it would be good if the Pituitary forum could get as busy as the Addison's one is. It would of course need the support of users of the forum to visit regularly and get involved, but hopefully that would happen once the ball got rolling. Perhaps kicking off a programme of events that link into the forum to get people visiting it would be a start. I know there are also a lot of people who attend the physical meetings, so perhaps the forum could be discussed there to see if people are interested. I am in the Solent Pituitary area, so have been to one of their meetings and are part of their Facebook group. The upside to this is that i can speak to people local to me, the downside of this is fragmentation, having a national forum that perhaps people feel they don't need because they have their local support group.

I do like the idea of Tweet chats, as I do like social media. Raising awareness via this route is good and you could perhaps do 2 or 3 a year to get people and healthcare professionals involved.

As for the look and feel of the forum, it is a 'bog standard' type forum, I'm not sure whether a new fresh look site would help or not. Although having a fairly static site that 'looks' like nothing has changed for ages might put people off. More modern forum platforms allow you to send personal messages, subscribe to topics of interest etc. So perhaps it is worth considering.

[Carl]

An issue for us is that at the moment only Pituitary Foundation members can use the forum - if we open up the forum we can potentially have a worldwide community. Would that be good?

Honestly not sure about a worldwide forum. Although what you can get wrong with your Pituitary is common to people all across the world, each country has their own way of dealing with the treatment, different drug names, different treatment regimes and of course different healthcare systems. So it could get complicated. Could we draw on experience from other 'disease communities' to see how they run their sites?

Opening up the existing forum so it isn't closed, I suppose you could have both a closed part (as now) and an open part?

The two URL's are very similar for our site (http://www.pituitary.org.uk) and the American site (http://www.pituitary.org), perhaps that is why we get a lot of American visitors?

[member_42793]

A weekly quiz would probably encourage people to come back each week, once you have people on the forum/website, most people will then browse through or if each week the quiz has a few links/pages of interest on the website and maybe the top 5 recent forum posts?

Karl

[steve]

I think opening the Forum up to non-members is a good idea. To be successful a forum needs have a 'critical mass' and that would be the easiest way of achieving it. The alternative is increase the frequency that members post, which is much harder.

Good luck, Steve

[fraserc]

My own instinct is that opening up to non members would be good. We'd need to moderate carefully though!

Thanks for the thoughts - keep them coming!

What do you value on the current website? We're looking at updates soon.

Thanks

[Mgh]

Some thoughts!
I have used the forum fairly frequently since diagnosis in 2011. At first it was to seek views and info from those who were further along in their pituitary journey. Gradually I have responded to similar requests from those embarking on this journey. At a time when my mind was addled by hypopituitary fog I valued the clarity of the forum and found it relatively easy to use. I valued this aspect then and still do. I would not want to wade through lots of irrelevant posts in order to find what related to me.
I can understand that you might want to promote greater participation. Maybe a consultation with members through the magazine inviting them to email answers to questions in relation to redesign ideas. Another option would be an online questionnaire. I think guidance from people throughout the age range is needed. Perhaps a panel of people from different age groups could help with trialling a proposed new design.