Great to see you, yesterday, and I was happy to take The Parky Petition forward one name.
Anyway, you’re absolutely right about getting the REAL story about Health Data, and Health Science in general, out there. The old saying goes: “Bad news has won the race before Good news has put its running shoes on” and as a journalist you know ow how true that is. I think it’s also a matter of language. When I was working in science, I never really spoke about my work, even in general terms, because nobody knew what I was talking about. It wasn’t a matter of me talking in Science Speak but people just ‘switch-off’ when the word ‘science’, especially ‘Biomedical Science’ is mentioned. We need to find a way for ‘Biomedical science’ to connect with ‘normal life’. Everyone likes their mobile phone and sees the benefit of ‘that sort of science’ but they don’t find saving their liver or even their own children ‘sexy’ because that’s ‘the boring sort of science’. That’s definitely Weird Science, isn’t it?!?
So, what to do?? Well, you keep doing your thing and I’ll keep doing mine. I’m educating (amongst a range of other things) the next generation of mental health practitioners at KCL to be more human and speak to their patients as human beings, plus to listen their whole story and not just the medical notes. It’ll make them better clinicians and make life better for the patients, plus get them to keep on track with their treatment(s). Compliance is easier when you’re doing it for someone you like.
We’re all stories in the end. Let’s put the good ones in a Rolls-Royce, so they can wave at the bad ones as they pass them on the way to that Finish Line…………
The one thing which is missing, and preventing data sharing, is patient consent.
If only the NHS put as much effort into obtaining consent as it does in trying to do things without consent, we'd have at least a decade's worth of data by now.
It is difficult because data sharing tends to end up being so black and white. I'd be *very* pleased if my GP and hospital would share information with each other and any other NHS facility. I wouldn't particularly mind my data being used for most medical research, especially if it could be genuinely anonymous. I don't want my data being used for anything to do with insurance providers, Palantir etc. I think this processing of our data, especially by US companies who don't have a great record with GDPR may be the cause of the concerns and if we could change the consent to deal with this, it might help
I wish I could share your enthusiasm for data sharing my personal health records for research purpose, but I do not. Look at all the data already available and the research outcomes to date. Perhaps GPs should institute a waiver which says if you do not want your personal health data shared, sign here. At least allow people to sign a consent form, that includes the risks of giving your personal health data to Palantir. Unlike all those who received a mRNA covid jab with NO consent form whatsoever.
Comments about social media being the boogeyman, just don’t ring true. Are you against free speech, but you want the freedom to share everyone’s personal health data? I have not watched msm for nearly five years. No news “stories” on tv, radio or newspapers. None. I don’t believe I missed a thing. Speaking of social media, you and many other great writers use substack to share information.
Just like the boogeyman AI, social media has been castigated into the “evil” bin. Meanwhile, msm continues to drip drip drip dystopian “news”. Sadly, my husband is a Tv news addict.
Great to see you, yesterday, and I was happy to take The Parky Petition forward one name.
Anyway, you’re absolutely right about getting the REAL story about Health Data, and Health Science in general, out there. The old saying goes: “Bad news has won the race before Good news has put its running shoes on” and as a journalist you know ow how true that is. I think it’s also a matter of language. When I was working in science, I never really spoke about my work, even in general terms, because nobody knew what I was talking about. It wasn’t a matter of me talking in Science Speak but people just ‘switch-off’ when the word ‘science’, especially ‘Biomedical Science’ is mentioned. We need to find a way for ‘Biomedical science’ to connect with ‘normal life’. Everyone likes their mobile phone and sees the benefit of ‘that sort of science’ but they don’t find saving their liver or even their own children ‘sexy’ because that’s ‘the boring sort of science’. That’s definitely Weird Science, isn’t it?!?
So, what to do?? Well, you keep doing your thing and I’ll keep doing mine. I’m educating (amongst a range of other things) the next generation of mental health practitioners at KCL to be more human and speak to their patients as human beings, plus to listen their whole story and not just the medical notes. It’ll make them better clinicians and make life better for the patients, plus get them to keep on track with their treatment(s). Compliance is easier when you’re doing it for someone you like.
We’re all stories in the end. Let’s put the good ones in a Rolls-Royce, so they can wave at the bad ones as they pass them on the way to that Finish Line…………
The one thing which is missing, and preventing data sharing, is patient consent.
If only the NHS put as much effort into obtaining consent as it does in trying to do things without consent, we'd have at least a decade's worth of data by now.
It is difficult because data sharing tends to end up being so black and white. I'd be *very* pleased if my GP and hospital would share information with each other and any other NHS facility. I wouldn't particularly mind my data being used for most medical research, especially if it could be genuinely anonymous. I don't want my data being used for anything to do with insurance providers, Palantir etc. I think this processing of our data, especially by US companies who don't have a great record with GDPR may be the cause of the concerns and if we could change the consent to deal with this, it might help
I wish I could share your enthusiasm for data sharing my personal health records for research purpose, but I do not. Look at all the data already available and the research outcomes to date. Perhaps GPs should institute a waiver which says if you do not want your personal health data shared, sign here. At least allow people to sign a consent form, that includes the risks of giving your personal health data to Palantir. Unlike all those who received a mRNA covid jab with NO consent form whatsoever.
Comments about social media being the boogeyman, just don’t ring true. Are you against free speech, but you want the freedom to share everyone’s personal health data? I have not watched msm for nearly five years. No news “stories” on tv, radio or newspapers. None. I don’t believe I missed a thing. Speaking of social media, you and many other great writers use substack to share information.
Just like the boogeyman AI, social media has been castigated into the “evil” bin. Meanwhile, msm continues to drip drip drip dystopian “news”. Sadly, my husband is a Tv news addict.