Article: The Emerging World of Online Health Communities

[Biggles2]

This is an interesting article from the Stanford Social Innovation Review:
'The Emerging World of Online Health Communities'

"Patient-led sites that offer support and information are the most well-known. They typically offer a moderated forum, blogs, advice, support, academic references, and a place to shop for relevant products."​

I liked the following description/definition:

"Gift economies. Forums where people share their experience with a disease and others provide feedback to improve services are examples of gift economies, where members give valuable services to each other freely and with no expectation of financial reward."​

There is no doubt that on-line communities such as ours greatly expand the capacity of the health system. However, within health systems we are to a certain extent an 'invisible' or undervalued resource. Hopefully, articles such as this one will change that perception.
https://ssir.org/articles/entry/the_emerging_world_of_online_health_communities

 

[rmz80]

It did cross my mind if forums such as this are more important in countries without universal healthcare such as USA.

 

[Biggles2]

It did cross my mind if forums such as this are more important in countries without universal healthcare such as USA.

I think a forum like this one is valuable in any health care system; it can increase capacity regardless of whether the system is centrally funded through taxation (like the NHS), or whether it is a mixture of government and private like in the US and Germany for example. How many times do we see new members coming straight to our forum after leaving the doctor's office/surgery with more questions than answers? We are a world-wide community and we all seem to face very similar frustrations within our respective healthcare systems.

We are where we are today because of previous disruption efforts in the healthcare system. Take evidence-based medicine (EBM) for instance. EBM was a promising strategy to eliminate waste from the system. In theory it is a wonderful concept, and it has certainly disrupted the status quo ante.

However, EBM has had unintended consequences: it has actually changed how health care is provided. EMB, with its focus on standardizing treatment pathways, has led to the one size fits all approach to providing healthcare. It has led to the industrialization of medicine through the focus on population health level guidelines and the accompanying quality metrics with their rewards and penalties. The focus of the consultation is now on the guidelines and throughput: seeing the maximum number of patients per day and treat them all according to the guidelines for their particular conditions. No time for education, no time for shared decision-making, no time for emotional support.

The end result is that no one is happy - neither patients nor doctors. As patients, we feel that we are seen less as individuals, we feel rushed during our appointments, we feel like an afterthought - feelings we see expressed on this forum every day. This forum is a platform where we can feel validated, get support, and learn for our collective wisdom.

I am just glad to see that we are beginning to get the respect we deserve in the healthcare literature!

 

[Daibell]

One of the big problems with the NHS is that it's tops-down 'Tell and Sell' approach. GPs and DNs are told the diagnosis approach, what to say to patients and what to prescribe. Much of this is directed by NICE or out-dated training courses given by people who are not experts. Most of what NICE says makes sense but it isn't translated into the training courses. We all know about the lobby groups behind much of the information with the Eat Well Guide being notorious and having little to do with health. We may be amateurs but we have no agendas, tell it as it is and with enough of us contributing the end-result is a good range of valuable information.

 

[Biggles2]

We all know about the lobby groups behind much of the information with the Eat Well Guide being notorious and having little to do with health.

Funny you should mention that @Diabell I just read this article today, quoting Dr. Aseem Malhotra calling for an urgent inquiry:

“As there are so many commercial influences throughout the system that are hindering progress in revolutionising medical care, I think there needs to be a Chilcot-style inquiry to resolve this issue as a matter of urgency.”​

https://inews.co.uk/news/health/chilcot-style-inquiry-health-experts-overprescription-drugs/

 

[Jo_the_boat]

Back to the OP.
I think that a large part of the reason for the popularity of patient-led initiatives is trust.
There is no agenda attached to any advice offered, no financial incentive.
We can take time to ask questions and receive replies.
What we get is, 'try this, I do it and it works', not, 'here, take this, a committee says so.'

Much of the advice we are offered is politically or financially biased. People take to on-line forums for honesty and integrity - that is not the way it should be.

 

[BrianTheElder]

Back to the OP.
I think that a large part of the reason for the popularity of patient-led initiatives is trust.
There is no agenda attached to any advice offered, no financial incentive.
We can take time to ask questions and receive replies.
What we get is, 'try this, I do it and it works', not, 'here, take this, a committee says so.'

Much of the advice we are offered is politically or financially biased. People take to on-line forums for honesty and integrity - that is not the way it should be.

Which is why I worry about the "and a place to shop for relevant products" in the article.
I hope this doesn't become a feature of this site.