This past week has been a particularly varied one, which is what I really enjoy. I have done some speaking, writing, and lots of personal engagement. I have received some fantastic feedback from last week’s post, and have been involved in some very fruitful dialogue. What I try and do with my writing is to stimulate thought and discussion. Cancer is such an emotive subject, and we will all have our opinions. There is no right and wrong, only what feels right for you. I am happy to share my thoughts to open up a conversation. I have been grateful, particularly to the many people affected by pancreatic cancer who contacted me, to talk about their work. Thank you, I learned a lot!
I was invited to join a ‘tweet chat,’ hosted in Canada, about healthcare blogging. My invitation came from an organisation that had seen my work on the Internet. There was a truly international group, exchanging ideas and experience. We spent an hour, and a transcript can be followed here #hcsmca on Twitter. The participants were mostly professionals, and there were a few patients like myself.
On Friday, I was a guest speaker at a cancer forum of some of the major UK cancer charities. One of the common talking points was social media. How the power of it was understood, but how it could be used effectively, wasn’t. My views were being sought, as a social media savvy patient. 
In many respects, I am pleased that organisations are starting to look to engage, better, and are beginning to talk to people like myself, of which there are plenty. But I am still shocked at the general deep rooted suspicions and lack of knowledge within healthcare generally.
Charities and marketing companies within the sector, have not been slow, to use the massive influence and communication that social media brings. They have large teams of specialists, to get their messages out there. Very effectively I might add! However, my concern is that this sort of education is not passed along to the people dealing with patients? It seems the sector is very happy to use it to raise money, and profile, and less so to educate clinicians and patients.
I quite understand that this current generation of clinicians and staff do not fully understand the benefits of social media. I didn’t either, but had the time and desire to find out more. What does concern me however is that I see no evidence where social media is included in current training, for medical staff.
The Internet is now twenty five years old, and is quite possibly one of the biggest innovations that we will ever see in our life time, particularly as it is virtually free for everyone. It has caused one of the biggest economical shifts too, as our lives are changing, with the way we shop, pay bills, do our banking etc.
It seems to me that in general, for the healthcare sector, time has stood still regarding technology, as far as patients are concerned. There is so much wonderful resource available online, but for fear of doing the wrong thing, nothing is done. 
I liken this scenario to being introduced to a massive library, (the Internet) with all the resources you will ever need, but no health professional feels able to show you where your specific information is found. So you end up searching on your own, and more than likely finding the stuff you shouldn’t! Seems crazy doesn’t it?
There appears to be different groups forming, though. Some at higher levels of management, who do understand the uses, and use it to communicate with their peers. Others that do want to engage with patients, but there are not many of those. Also there are some very good nurses groups appearing, but again, mostly they communicate with their colleagues.
Patients are doing their best to support each other and there are wonderful worldwide groups happening, for most cancers. However I can’t help feeling frustrated, that the true value of health support is not even starting yet. We have certainly come a long way though. When I was first in treated in isolation, there was no wifi in the room (2007.) My experience shows me that the only benefits patients will receive from social media within healthcare are what is patient driven.
My experience, in both giving and receiving support via social networking, has shown me that there is a massive benefit for everyone. Those for the patient are obvious, but the clinicians and staff ,will have a better understanding of patient experience, by joining forums etc.
I fully understand the down sides too, with privacy and confidentiality issues to the fore, but the biggest danger I feel, is that the healthcare sector does NOTHING. Thus wasting the wonderful resources of support that we have been given. If we have received new tools, it is almost a crime not to use them!
I couldn’t agree more with you Chris. As the Internet increasingly becomes the medium of choice for researching health information, social media has become an important channel for connecting with patients and disseminating and expanding the reach of healthcare. It is a radical shift in the way we communicate; the healthcare conversation is no longer a one-way narrative but is evolving into a global, participatory discussion facilitated by social media.
I think we both read off the same page Marie! The more meetings I attend and the more presentations I do, I am always amazed, how healthcare in general, rarely talk about the benefits of social media for patients. I really don’t think they get it. Sure they use it to communicate amongst themselves, but it still is that one-way narrative you describe.
Many professionals use it privately, but there is no guidance from above, about professional use. All I hear when I mention it, are the negatives, but will keep chipping away Marie! Thanks also for sharing the post. Chris
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