Privacy campaigners have reacted with concern to the announcement by Health Secretary, Matt 'Prime Membership' Hancock, that the NHS and Amazon have done a deal to provide health advice through its Alexa smart speakers. The concerns need addressing although I feel a lot more chilled out about it than some of the things Alexa already … Continue reading A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI
'I was averaging out at two meetings about digital per week before Christmas,' said my friend over coffee. As she said it I mused to myself that it must be at least one a day by now. Yes, 2019 has heralded more meetings, events and conferences about data, digital and AI than votes about Brexit … Continue reading What’s this screwed up ball of paper got to do with health data research? Read on.
Quite a few of Saturday's papers covered the health secretary's announcement that he wants the NHS to offer healthy 'volunteers' the option of paying to have their DNA analysed. The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments. … Continue reading A view about the health secretary’s announcement on healthy volunteers and DNA tests
White, middle-class and well-connected - and that's just the patients: is this the health research culture we wish to see in the UK? Ever since it was established in 2011, the Health Research Authority (HRA) - the UK regulator of health research whose mission is 'to protect and promote the public interest' - has commissioned … Continue reading New @HRA_Latest @OfficialNIHR data on UK public attitudes to health research highlights need to work with under-represented groups to break down barriers #diversity
If you have read my last two blogs - and if you have, thank you - then you will know I have been sharing some of my family's experiences of health and social care over the last six months. Now that my father is home following his stroke we have entered a whole new chapter … Continue reading Prevaricare is a new care service coming to you very soon. But don’t wait in.
I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the 'Joint Programme - Neurodegenerative Disease Research.' It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment. This, after twelve months, of … Continue reading Patients and researchers – sparring partners not hostile combatants
If the day has a 'y' in it then I guarantee that policy-makers and experts somewhere across Whitehall and Westminster are meeting to plot a way through the stalemate otherwise known as the 'use of health data.' That is: how we are going to use my and everyone else's medical records to make people better now and in … Continue reading From A to B on using medical records to help people get better
The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards. Here's a copy of the actual report. There is much coverage in the media already including the … Continue reading Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
I note that it is London Fashion Week. I look forward to finding out what colours are 'in' or 'out,' what I should or should not be wearing over the next 12 months. Science is no stranger to fashions or trends. All of a sudden you can find yourself deluged with reports and the such … Continue reading This autumn we will all be wearing….. ‘stratified medicine.’ New reports by ABPI and TSB
The fundamental issue at stake here is respect for the citizen. The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper? Many will say that NHS England - who yesterday announced a … Continue reading Comment: So what next for care.data?
The following is a more polished and slightly amended version [the bits in brackets I didn't say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday. The title of the conference was: '360 of Health Data - Harnessing big data for better health.' I had written … Continue reading Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
Public involvement in research: would you like that shaken or stirred? So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’ This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the … Continue reading Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?
So sang The Beach Boys who were on Radio 2's 'In Concert' this week. Not that I'm a great fan but it seemed apposite given my week. This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, … Continue reading Round round get around I get around – Caldicott2, patient data, dementia portal and more!
You can find the full text of the Prime Minister's speech at the Global Health Policy Summit in London today here. David Cameron's remarks have caught the headlines because of his announcement about the new Phenome Centre. But, as important, are a number of other areas of his speech. These deal with the importance of the … Continue reading PM’s Global Health Policy Summit Speech signals the personal as well as phenomenal
If you are looking for Olympics-mayhem avoidance strategies then what better than taking the opportunity to share your views on Information Governance. My good colleagues at INVOLVE have reminded me to remind you, that Caldicott's remaining public workshops will take place on 8 August in Birmingham and on 22 August in Oxford. The one in Leeds today was … Continue reading Caldicott 2 public evidence sessions
'Caldicott 2' is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn. The title of the review is 'Information: to share or not to share?' I passed by the official website today and noticed that it now has a huge amount of information … Continue reading ‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
Sometimes you are just defeated by the brilliance of others. So, if you are looking for a wonderful summary of what the autumn statement means for health research, then I can highly recommend Becky's Policy Pages. Clearly, the opening up of health data is the single most important strategic announcement in today's statement - much … Continue reading Patients, ethics committees and clinical research – NRES/INVOLVE report highlights ‘public’ challenge for new health research regulator (HRA)
Here's hoping this works. So, (sorry John Humphries et al) rather than send you all off somewhere else, here is the pdf of the whole patient information leaflet 'Your health records saves lives' which I wrote about yesterday. Click here: PHR LIFT England online As I say, please pass it on...for me. And you can … Continue reading ‘Your health records saves lives leaflet’…now available here
Over the holidays I caught a BBC Radio 4 item about the days of the touch typist. It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed. It also brought back many memories of my time as a messenger at the old … Continue reading Getting touchy over the information revolution