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
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.
It is curious how life often brings us back to places once well-trodden but then lost to us for one reason or another. Last week I was in Stockport. I have a vivid childhood memory of my mother taking me by train to have my broken arm re-set and put in plaster in the hospital … Continue reading A trip down memory lane makes me think Stockport is the perfect place to begin a coup ‘data’
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
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
Sir Nick Partridge's review published today, of data releases by the NHS Information Centre, is an elegant demolition of all that has gone before in the way in which medical records have been commoditised and shared with public and private sector organisations. Everyone should read it. I am sure that many better informed people than I … Continue reading Partridge Review’s elegant demolition of past practice on personal data offers opportunity for fresh start with the public
Excuse my laziness but it is Saturday. Here's a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA … Continue reading Health Research Authority looks for good practice in identifying research participants – survey.
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
The aforementioned survey is after the blog post if you can't stand the thought of reading this intro..... I somehow think that 'data' will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference '360 of Health Data: Harnessing Big Data for Better … Continue reading Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
Today NHS Blood and Transplant (NHSBT) has called for a radical change in public attitudes and behaviours towards organ donation.The public have been asked to respond to NHSBT's new strategy. This asks people to consider some tough questions such as whether registered organ donors should go to the front of the queue for organ donation ahead of … Continue reading Leadership, and a strategy transplant from NHSBT would do the patient data debate no harm
Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2). Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research. You can read the full report here and, … Continue reading The UK has a lorra lorra data and this is how it’s handling it in medical research
The Health Service Journal (HSJ) has an 'exclusive' interview today with Dame Fiona Caldicott. Dame Fiona has been chairing a review - of information governance in health and social care - 'Caldicott2.' Its report and recommendations are due out in just a few short weeks.You have to subscribe to HSJ to read the full interview … Continue reading How a Dame and the Great British Public might bring an end to the patient data pantomime…
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
Actually that's not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens … Continue reading My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
'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 thought that people might be interested in this report from the Health Service Journal (HSJ) of a speech that Dame Fiona Caldicott made at the Health In4matics conference earlier this week. She discusses the challenges for GPs in providing patients with online access to their medical records. I heard this week that the Department … Continue reading Health Information Governance Review: Caldicott at Health In4matics