Beyond the Clinic: How Patient Organisations Support Care

Fantastic.

And can you give any examples of practice done well with support through local support groups or helplines, just to flesh out what we've been talking about? Sue, perhaps can you think of any specific situations?

I think one of the things when we first created OSTEO UK, we involved the community in helping us understand what we needed to achieve as an organization, and there were several outcomes that were articulated, and one of those was about reducing the stigma Reducing the sense of isolation and loneliness.

And these outcomes we measure are, are kind of like on a three-year cycle.

And I think the fact that we've seen people report that their sense of loneliness and isolation has reduced.

So I think I would share that back.

It's not a specific, but it's more of a kind of global feedback from our community that what we're doing i- is helping to reduce that sense of isolation.

Yeah.

And I think certainly within PMR-GCA UK, we talked a lot about the psychological support, which is so important.

But I think certainly my patients also find a great deal of support talking to other patients about treatment options available.

As within these two illnesses, there is a lot of discussion around what's the best treatment course for patients.

They get a lot of differing opinions from their healthcare professional, from support groups more widely and, for example, online or on Facebook.

And I think that we as an organization, our role is to kind of make sense of tho- the differences of information that are out there in a more robust way.

I, I, I think that's something y- we've also talked about before, Sue, um, a- about our role being there to provide understandable but a measured and sensible real-world advice in a confusing world with lots of different information coming at you.

Is that something that you recognize?

Absolutely.

And the growing kind of trend of mis and disinformation through all the proliferation of social media channels is really alarming.

And then you add into the mix AI summaries in the healthcare space, some of which are not correct, they're not accurate, and in some cases, dangerously misleading.

That is why I think patient organizations have got such an important role to play in making sure that people get access to that information, and knowing that it is credible, that it's evidence-based, is accurate.

And many of the organizations have a, a medical subcommittee where we then can go and check our content to make sure that it is accurate.

And there's also the thing called the PIF TICK, uh, which is delivered by an organization called the Patient Information Forum, and they have set up an alternative to the NHS information standard, which doesn't exist anymore.

So it is a way that if a patient sees that quality standard mark, they can, and clinicians to some extent, can be reassured that where people are being signposted to, actually the information that they'll be accessing is of the highest quality.

I think one of the things that we have in the social media space, it's making sure that we moderate, and that's pretty time-consuming.

Because patients, yes, can share their experiences, but when you've got conditions that affect people in a kind of variety of different ways, everybody's experience of is unique of these rare autoimmune conditions.

So we've got to be really careful that in trying to be helpful, these individuals are not misleading.