My Stroke Guide: recent changes and the reasons behind them

My Stroke Guide was created to be a place where people can come to find out information relevant to their stroke and join a community of stroke survivors (and others affected by stroke).

But over the years, the website had become dated and needed to be refreshed. We also knew that there were changes we needed to make to ensure the forum was secure and accessible.

So in 2020, we started looking into what needed to be done and what our users wanted. And in November 2021, we launched the new My Stroke Guide and forum. So I thought I'd take this opportunity to talk a little bit about these decisions and the reasons behind them.

As many of the biggest changes were made on the My Stroke Guide forum, however, I'm going to focus on that. But first, let's with some background.

What is the My Stroke Guide forum?

No one knows more about what you're going through than another stroke survivor. And that is the whole reason for the forum.

My Stroke Guide forum, in a nutshell, is a place to join a community of stroke survivors and others affected by stroke (carers, friends, and family). You will also find healthcare professionals and researchers who work to improve the lives of stroke survivors.

As a community, you can come together to discuss the topics that are of most interest to you. It is a place where people share advice, talk about their own experiences, and offer support.

You will be able to read about different people's experience of stroke and recovery, including their frustrations and victories along the way. People also share their experience of medications and therapies, what's helping and what isn't and new research they've heard about.

There are conversations about work, navigating the benefits system, getting back to driving, relationships, and other aspects of everyday life. Some of my favourite threads are about people's hobbies, I love reading about people's gardens and seeing pictures of their baking triumphs.

In short, it's a place for you to discuss anything on your mind with people who understand what you're going through.

Who can join?

Everyone. We want everyone affected by stroke to feel like they have a place in this community. That includes people of any age or background.

All are welcome.

Recent changes to My Stroke Guide

As you may have seen, My Stroke Guide and the forum have recently undergone some fairly major changes.

We wanted to make these changes for two reasons.

The first reason for the recent overhaul was down to feedback from our users. They were telling us that My Stroke Guide was hard to navigate and looked outdated (and a bit overly simplistic).

But the other big reason was that the forum needed to be updated so we could provide a more secure environment.

So we started building a new space, working closely with stroke survivors at each stage to ensure we were creating something that could meet our technical requirements and their community needs.

Increased security

Our new forum is built on a platform called Discourse, which you don't really need to know unless you're interested in forum management.

What is important and what we want people to know is that Discourse is incredibly secure and easy to update. Web security is an ever changing landscape and you need to be fast to stay on top of the latest threats.

Our old forum architecture was also very secure, but difficult to update. This meant that, when new security changes needed to be added, it took time and the involvement of quite a few people.

The new forum can be updated much more easily, with very few people needing to be involved. Meaning new security updates can be added within hours, rather than days. This ensures that the forum always has the latest security patches and protections against attack.

Open forum

Another of the big changes to the forum was the decision to make the forum open. An open forum is one where anyone can read what is posted, although only members can actually add new posts.

We decided to propose this change after speaking with a number of other charities. They had found that an open forum meant that they could reach more people who needed the support of their community.

The thought process goes a bit like this: If someone is looking for support following a stroke, being forced to sign up for a site can seem daunting. This was something our panel of stroke survivors could attest to.

By removing that obstacle from the process, we are able to get the message out there about stroke and recovery. And stroke survivors are able to find out about the community before they decide to join it.

But, we recognise that not everyone wants their posts shared with non-members. Users can mark their posts as unlisted, meaning that it is shared with only the people who they have nominated. Alternatively, people can post these kinds of topics in private groups, which are not open to the public.

The decision to make My Stroke Guide an open forum was only made after a lot of external research and consultation with stroke survivors. But it is one that we think will result in more people benefiting from the service.

Better mobile access

And then, last but not least, was the question of mobile access. Our old forum certainly worked on mobile, but it wasn't the best experience. So we made sure our new platform would give us something better.

This became a priority, in part, because of the increase in how many of our users were starting to access the forum (as well as My Stroke Guide) on their mobile devices.

We wanted a forum and site that people could access and use no matter where they were. And no matter which device they wanted to use.

Our new forum is not only more mobile friendly, it is also accessible via a mobile app. If you'd like to use the app, please watch the video below on how to install and use it.

Feedback so far

As with any change, there have been a range of opinions on the new look of My Stroke Guide and the forum.

Overall, the feedback on My Stroke Guide has been really positive. Outside of a few technical hiccups, people seem to really like the new look. They find it easier to navigate and find the information they were looking for.

With the forum, though, we'll be honest and say that the reception has been more mixed. Some of our users love the new look and find it a huge improvement on the previous format. Other users are finding this new format more difficult to use and found the process of logging back in frustrating.

We've been working hard to provide guidance for those who are struggling with the new site. This includes a number of articles, videos, and a series of webinars to help support them.

To everyone who has been frustrated, I'd like to say that, even if you aren't seeing the changes straight away, please know that we are listening and working to address any issues you have raised.

If you've got some feedback on the new My Stroke Guide and/or forum, we'd love to hear it. You can submit feedback by clicking here.