 Thank you very much for coming to this event. It is a relaxed event with booze so that is always a good start. And we are going to talk about data. You are going to hear from a very erudite panel that I will introduce shortly. Data saves lives that it always has done. We know this from the work that provened the link between smoking a lung cancer a rydym wedi gweld ei wneud y ddweud o'r ymddangos y Llyfrgellau MMR, sy'n gwybod dros agorodol. Rwy'n credu wneud o'r dda ni'n meddwl. Rwy'n credu i gael'r cyfnod o'r fod yn ffawr, mae'n rhoi drwistig o ffordd. Rwy'n gweld blynydd, rwy'n gwneud yw gwasanaethau ac rwy'n gwneud yw'r ddau. Rwy'n gwneud yw 80% o'r cyfnod o'r ddau, mae'n ddau'n mynd i ddau i fod yn ddau i gael yw'r ddau ac mae'r cyfweld ei hunain. Llywodraeth iawn i'r cyfweld, mae'r cyfweld ei hunain yn ddud. A mae'n gynghwyl o ddau pobl. Mae'r cyfweld ei hyn yn ystod, sydd yn rhoi dim eich dynion a llunio gyda ni'r ddweud. Ac mae'n ddysgu'r rhywun i'r cyfweld mae'r cyfweld o'r ddweud a'r ddweud o 80,000 pwysig ddweud per dyn nhw, uch chi'n ddim yn mawr. Ac y gallu ddau i'r cyfnodd yn ymdweud o'r ysbanydd i ddweud o'r gyfnodd ac a'r cyfladau gynhyrchu. Mae'n ymdweud o ddau'r cyfloddau. Felly, mae'r amser o'r myfioedd ymdweud ymddangos ond rwy'n byw'r gwaith o'r tynnu. Rwy'n gweithio'n bywch chi'n gweithio'r panell, a'n gweithio'n gweithio'n gweithio'r gwelwch i'r gwisgwyl, ac mae'n dweud o'r ddweud o'r ddweud. Rwy'n meddwl i'r rhai o'r rhan o'r rhwng sy'n gweithio'r cyffredinol a'r cyfnod o'r ddych chi'n dweud. Felly, ydych chi'n dweud o'r ddweud o'r ddweud i gael gweithio'r ddweud i gael gweithio'r ddweud. Felly, rwy'n meddwl i'n gweithio, rwy'n meddwl i'r panel, i ddweud o Professor Liam Smeith, yw'r gyffredinol a Professor o Clinicol Epodemiologi ar y Llyfr angen i'n gyffredinol a roedd ymwylo gyda'r meddwl i ddweud o'r rhwng sydd, i'r ddweud o'r ddweud o'r cyffredinol i'r ddweud. Felly, rwy'n meddwl i'n gweithio'r ddweud ac yn ymddangos i'r ddweud o'r ddweud. Felly, mae'n pethau i Gwelch Peth, i ddweudio i'r ddweud o'r ddweud o'r ddweud. Felly, mae'n ddweud o'r ddweud o'r ddweud roedd, warnesio a'r oeddwch gyntaf gweld ei cyllideb yn cael ei swydd. Pwedeb gylai amalodau y ffordd, a'r pwedeb yw sy'n teulu yn gweithio'r pwedeb yn gallu'n gweithu. Roedd o'i amlunio i'r diwylliant hyfforddodd yn gweithio y ffordd? Roedd o'n gallu'n gweithio? Roedd y然后n arlu Wrth wrth, rydw i'n cynhyrch, Sam Smith, a'r coordinator efo meddwyr oedd yn gweithio ar yr anferd ac yn y bydd hyn o'r gweithio a'r rallwn ar y gweithio dweud i gynnwys i'r lawr ac i beth o'r clywed y penderfynu i ddweud ei ddeudio gyliannidol y brifysgol yn ddeudio. Mae beth mae'r cymaint yn ychydig... yn gyntaf ar gyfer nhw'n fyfgrifetel yr aelodau. Mwy oedd hynny'n meddwl i'r newid yn agored, ers rydyn ni'w gyn nhw'n ddweud i'r hanfosiet a lefnosu chi. Mae'n gwybod i'r gweithio yna gyd, rhaglenni'n ei gweithio, a'u mwy'n meddwl i'r cyffredinydd i gyd yn gweithio. Felly, rydyn ni'n gweithio'r ystod dweud maen nhw'n dwyaf, prof. Liam Smith, ddweud i chi yn ddweud. Roedd gennych. Roeddwn i'n gweithio'r ystod o'r ystod o'r drwy iawn, roedd gennym hwnna'n ddweud. Roedd ystod ar yr arnod ystod o'r ddweud, ond ytw i'r cael ei wneud yma, ond yn ddweud o iawn i'n dweud i cyfeirio'r ystod o'r cyfwysig yma. Roedd yn ddweud ystod o'r dwg ddweud o'r ddweud o'r ddweud. And then I'll start with the serious point. Who knows, don't shout out. Who knows who recently left one direction? If you know put your hand up. Don't shout out. I won't test you so you can pretend you know it's alright. You put your hands down. Now one issue is how do you know that knowledge? I'm talking about knowledge. And you might wish you didn't know, but you do. Some of you do know, a lot of you don't know, but you could find out in ten seconds if it was important to you. Diolch yn ei gyrwch. Rydyn ni'n ddau i'r gwych. Rydyn ni'n ddweud i'r gwybod i'r ffordd. Rwy'n cymaint o'r cymorth. Rydyn ni'n ddweud i'r Zika virus yma oedd ychydig yn ymgyrchol a'r Amherica sy'n gyfnodu'r Brysyl. Yr yma yma'r probleme yw'r bapau wedi'u hallu i'w mwyaf i'r yma ond, a'r cymorth yn cyfreidiau sydd yn cyfrifio i'r Zika virus. Ie, mae'n gweld i'r bwrn yn fwy o'r rhannu gyntaf, mae'r rhan o'r fwg a'r ddaethau yn gyfasig. Mae'n anodd perryd, mae'n anodd y cynnwys ar gael gwahanol sydd o'r rhannu cyffredinol. Felly ymlaen i'r rhan o'r bwrn i'r bwysig i'r rhannu. Mae'n byw ymlaen i'r bwysig i'r rhan o'r rhannu gyffredinol sydd o'r rhannu cyffredinol. Mae'n gwybod i'r rhannu, mae'n ddiddordeb yn ymddangos o'r wneud i'r gyffredinol, ac mae'r gweithio ddangos, mae'n gychwyn ffaseniadwyrwyd rhaid, mae'n ddweud o'i gweithio ddangos. Y dd擊ddu yn gweithio, ond mae'r gweithio, mae'n gweithio ddangos neu pawb i'r cyhoeddu. Mae'r cyHoeddwn ddangos i gyd, ac mae'n ddangos i gael gysgron, yw unig sy'n fyddal i'r cyhoeddu mor moddol a ddan nhw. Mae'r cyhoeddu wedi'u cyhoeddu hynny o blynedd gyda hwn o'r brifwyr wedi'u rhombosi. Llywodraeth ym Mhwy yw'r sgawdd dwylo'r gwirioneddau'r ysgrifennu os yna yn gweithio'r ydw i ddim yn gwneud ystod yn gweithio'r Sgawdd Llywodraeth, ac yn gweithio'r cyffredinol, mae'n gweithio'n gwirioneddau cyffredinol yn ei dyn nhw, mae'n rhaid i'w ysgawdd ystod sy'n gyfer y dyfodol. Nid yw'r sgawdd Llywodraeth ym Mhwy yw'r sgawdd, dwi'n trwy'n gwirioneddau'r ystod, have any strokes happened a year in London. We didn't know that, how could you reorganise the service? The only way we know how many strokes happened in London is because of health records data. The only way we know it, there isn't another way, you can't just ask someone because the only way they know it is because of the data. Charles mentioned the MMR autism. Miesel, M luxury vaccine and autism, this was actually Iron will to see what these are doing this week. I was involved in as an academic and there was a scare that this vaccine, particularly that measles part of it might cause autism, measles vaccine coverage rates plumeted worldwide. There were epidemics in Britain that are still happening now because of that dip. Because we could get hold of people's anonymised confidential medical data, we in similar Rydw i'n ddyn ni'n meddwl i'r dyn ni'n hyn i'n meddwl i'r unw plwysiwn arlu yn y Llyfrgellfa Gweithio? Mae'n meddwl i'r ddweud a'r ffordd o ddechrau a'r byw'n rhaid i drwy i'w eu bêl i'r yr adroddau peth yn gyfrifigol i'r ystodol. Rydw i'n meddwl i'r ffordd rhai a'r adroddau peth yn cyfrifigol i'r berthynas cyfrifigol i'r gwrs i fynd i'n meddwl i'r dayddau. If we hadn't been able to do those studies, if we had to go out and individually identify these children and their families and get consent, for a start we'd have to have recruited 8 million children and we'd still be recruiting now, we definitely wouldn't know the answer, public faith in the vaccine would have disappeared altogether and measles which kills lots of people, we'll be back in epidemic proportions around the world. So, is health data special? I think, yes it is. My data is special, my data is really special, and I want it to be anonymised and protected and confidential. I don't want anyone to have my medical records and know their mind, and I'm sure that's true of everybody. What we need are good safeguards and we need approved users that are using data for approved purposes. Already we've got a lot of safeguards in place. It's a criminal act to try and identify someone through hacking into their medical records. That's one of the reasons we haven't had a single case of that happening. It's really difficult to try and identify someone from anonymised medical records. I'm not saying it's completely impossible, but it hasn't been done maliciously. If you really wanted to get someone's secrets and their dirt and to blackmail them or sell them to the newspaper, just hire a journalist, have their phone or something, it's much easier. It goes with their dustbins or something, hacking into their anonymised medical records and de-encrypting them and then finding it's just not the way to go. So, I think health data are vital for high quality research, vital for high quality care for any of the care that you want to receive. They're vital if we're going to get the causes of disease, how to prevent disease and better treatments. These data, your data, have got to be used in ways that are adequately safeguarded to kept confidential and private. That's really key. It's not an issue of using your data versus privacy and confidentiality. The two for me go together completely and we need safeguards in place. We need to keep on the ball. This is a fast-changing field. We've got genomics coming along and that's going to change everything again. So, we need to be constantly on top of our game making sure, making best use of the data and making sure the data are protected and kept confidential. So, there was a big fuss made a while ago about companies like insurance companies getting hold of your data. I just wanted to clarify one important distinction. I'm not a great fan of the government or anyone else selling your data to anyone, but let's say that insurance companies need to exist and insurance companies need to know when people in the UK are going to die and what they're going to die of. That's a perfectly reasonable thing for them to need to know. They need to know how much it's going to cost them to insure people on a population level. I think that's the OK use of the data. What doesn't happen, and I would think will be a criminal act anyway, is for insurance companies to get hold of individual identifiable medical records and say on the basis of what's in your records, your premium is going to be this or we're not going to insure you. That shouldn't happen. It doesn't happen. It will be against the law. But on a population level, these data mean a lot to a great deal of people and could really help things. So it's not for me about is it better care versus confidentiality, the two go together. The data are vital for research. They're vital for care. We just need to make sure that privacy and confidentiality goes along with that and the proper use. Very good. Thank you very much, Liam. It's very rare to go from Zain Malik to the Zika virus in one open sentence, but if I've got the right one direction Malik, then that's it. Very good. So Peter Knight, thank you, you're next. You'll be glad to know there's no one direction who drinks and why. So what I want to try and do is just give a couple of three bits of coverage. One is around context, and I agree with Liam, better care or privacy nightmare. Actually it is better care with privacy and security and all those things that everybody comes to expect that we do safely with data. I think the other thing I want to do is think about where the future is going and actually the tsunami of data that's going to hit us in the next few years and how we handle that and the types of data because until the new data protection regulation in Europe starts to take force, we're still operating with data sets or data concepts in law which are still rooted in actually 1948 medical records, which we all, I don't know if you've still got Lord George envelopes, but the same logic of that. And then the third thing is just to think about the sort of verosity and scope of where data will end up and what we will think about doing in the future because it has such great potential to change the way we receive care, the way medicine and new disease sort of cures occur and all of that. So current context, we collect a lot of data. I guess a simple pop quiz, how many people do we see in 36 hours in the NHS? Does anybody know? Anybody want to shout a number out? Go on, you have a go. 100,000. No, we see a million patients every 36 hours. Okay, a million patients and each patient will have a multitude of data points that are collected by the system about them. And the key for that is that information is so vital in terms of understanding how we can plan services, so we're putting the right resources in the right place, how we can look at research and what we need to do in terms of looking at the epidemiological sort of development of disease and how that comes together. And also to see where prevalence occurs. There's been a lot of work done where you can actually, there's a lot of work done on putting together geospatial relationships between sort of the old insinirators that were pumping out lots of fluorocarbons and then actually where cancer was prevalent and you could see heat maps of how that's changed and you could see it 30 years ago now and as we've cleaned them up you can see the prevalence change. So we wouldn't know that without data. It's as simple as that. And actually that's not relatively identifiable data. It's actually quite anonymised data for actually creating the output of the research in that space. So data is a fundamental part of what we need to do. Now I've done a lot of work over the last number of years, myriad of years, working with the public and patients around this. And actually I think there's two things that we really need to learn from that. First of all when we explain why data is important and why it's useful for the research component of the world and also the planning of services, people get it. They think we do it all the time, most of the time, but actually they get it. What we need to be clear about is being transparent about that and I think those two things are really important in that dialogue. So for the system as it stands at the moment and I know Sam will talk about care.data, it's that transparency which makes the difference here. Building in the design, and we were at a citizens' jury last week where this came out quite strongly and it's a bit of work that's done by Manchester University where they'd taken a group of a population and said, look, have a look at this, it's small numbers but the logic plays out with what happened with the Wellcome Trust recent review as well, and report. If you don't know what you're talking about and you've not had it explained to you then you don't know what's going to happen. And then on the other side, when people are taken through what the data journey is, why data is important, what happens, actually people really get it and there's a shift, there's a clear shift for people being comfortable. But I think the one set of words that came out in this conversation for me and I know a number of people in the audience were there were public benefit. What is it that gets the people really understanding this? It's where public benefit occurs, where you as an individual benefit because you're getting better care and getting better treatments. Or more importantly, when society as a whole sees a better application and use of data to support disease management across the whole spectrum. So I think we have to have that intelligent debate about this because if we don't have both those sides of the coin it doesn't work. So that covers where the system is at the moment, where we used it, why it's important, what the benefits are. And I think on the other side of the equation is really about what future holds. So this tsunami of data, so how many people have got to fit bit on in the room? Right, okay, so I'll compete with you on steps now. The key point is we're going to have such velocity and veracity of data around at the moment that it can help. So if you're from a company over in Israel, the ability to take the latest technology from Samsung, put it on your wrist and they're working on algorithms to say, in 25 minutes you're probably going to have a heart attack, I'd end up getting to any if I was you. Now whether that works or not is a different matter, but the conceptual idea of that happening where you've got enough sensors in one device that can give you predictive analytics about your health is far off, that's the whole point about it. So that type of data, that volume of data that's going to come through, we need to deal with. At the moment, how many people know what Fitbit do with their data? Good question. How many people know what Google are just about to propose as an example? Another good question. And actually what do we do with our data? That's the other point about it. I always sort of relay the story about how many people use Skype to form Microsoft bought it. Everybody, yeah? How many people just signed the terms and conditions? Did you know what you were signing up for? So did you know your computer was going to be a major node on their network and it was going to root calls for you? Because that's effectively what you signed up to on the terms and conditions of the use of that service. Yeah, but are you prepared to do it? Okay, we're prepared to have that deal because we want the service. And in the same way, we've got to think about, as a society, what our contribution is for health data and what we're going to do with it and also what individually we benefit from that. Unless we have those real, live, intelligent debates about this, genomics data, that identifiable nature of that in terms of lots of... I can work out in a room that you might be a person that's all nearly 50 grey hair and stuttering at the moment. But you can start to get into that sort of analysis which you couldn't do with just the phenotypic data that we use day in, day out. And putting that together with phenotypic data to look at disease markers where we're going with different types of science, different types of activities is hugely important. So we've got to be able to handle that and understand that we've got to be able to know what we're doing with it. And that's not going to stop. It's going to get more intense, lots more velocity of this data coming. And then, of course, you go to something like the Internet of Things, the whole concept. I've just bought one of those nests. Has anyone else got one of those nests? It's that thing that when I get to Basingstake, it switches on my heating and by the time I get home, the house is warm and it's all done by a smartphone app. And with fridges that will tell you to buy something when you don't want to. But you know, you are going to get these devices coming into the concept of healthcare provision at home because actually the Internet of Things is going to enable that type of technology to happen. And we've already seen some very interesting experiments where people suffering from dementia and their ability to manage what they're doing. A really good example of this was a bit of telemetry that was put into a home. And what was happening was the patient was basically sort of mulling around the house. Cares would come in and what they would do is they'd say try and feed the patient. Well, the patient wasn't hungry. Why wasn't the patient hungry? That was the question, why? And actually with the telemetry what they worked out of 30 minutes before, the patient basically was going to get some food in the kitchen because there was a lot of activity in the kitchen. So all they did was change the care package for 30 minutes earlier and surprisingly that's exactly what had happened. Now that's technology in its advance that we will have to deal with and we'll have to manage and we'll have to have that sensible relationship between individuals receiving care, society as a whole and the knowledge that we're learning about different types of disease management and development. It's a mental component of that and if we get that wrong we're not going to advance science and advance the capability of treating people with dignity and with the care they need. So it's really important to do that. Thank you, Peter, very, very helpful. So you heard Peter talk there about public and the importance of that transparency. Sam, that's your game. Over to you. What do you think about what you've heard? The first thing to say is that if it's a privacy nightmare it isn't better care and at the risk of the panel completely agree on everything. Let's toss in some extra things. It's a very nice debate title and I'm sure Jeremy Hunt sees it as a nice political point but when it comes down to the front line the work doctors do day in, day out sort of political horse exhaust matters a lot less than medical reality and everybody who wants to use Fitbits can but everybody being forced to wear a Fitbit would just be weird. Data copying is hard and the outcomes of that are currently unknown. We have a lot of anecdotes and we're still waiting for the outcome of the COLDICOT reviews to large amounts of data although NHS England interestingly has already preempted that review by requesting permission to have access to and I quote have access to de-identified data containing a single identifier. That kind of shows how de-identification is kind of used as a sort of magic unicorn and gets us back to how we have better care while also having privacy. Medical care will continue to increasingly take more account of you as a person if you have a Fitbit that stuff should be used in more personalized medicine less spray and pray and there is an argument that says you should only have your genome sequenced once and it should be kept forever and used for everything that is called 50 million genome project and if people want to do that the Biobank would very much happily have you on their thing but everybody has ever had a blood test and then gone back for another one a few days later to see if the intervention you were given works can see that basically sequencing once and keeping it is mostly pointless for when you're actually ill. The NHS probably already knows what blood type you are but that doesn't mean that you don't get sent for a blood test when you're ill to check the current stage and all the other things in your blood that you weren't necessarily expecting and genomic medicine will turn out to be a lot more like that than it will about some magic bullet that you get once and sequencing once is really useful if what you care about is a big data system and you're one of the people who sells big data systems but this debate is about how you get better care not bigger toys and genetic sequencing is coming down to the price where it will be feasible to do everybody but it will continue to fall in price and a couple of years after that it will be feasible to test peopleism when you need it and throw away most of the results because you don't need to have it for everybody and having a database of your entire population's DNA could possibly get used for things and as I talk the Investigative Powers Bill has three minutes of debate left and that data can be used for basically anything that the agencies want if they ask for it they don't have to ask the Secretary of State to make it and that's kind of data gets copied and research projects may ask their target populations to share their sequence of research or all their data and there is always going to be a place for things like the Biobank none of that's going away but that's for the consented people and admin data coming off the health systems in terms of accessing data what Liam needs for his research is lifetime linked medical records that's what's needed if you know one event that's a key that unlocks the full record so I walk out of here I tend not to pay attention when crossing roads and if I get hit by a bus I'm sure some of you will be sad and some of you will be all amused and I'll end up at UCLH with my medical record coded as probably something like hit by a bus and that's may or may not be what's there but it's a case of you guys go all note were for the date, were for the time you know the gender and how many people got hit by a bus today and that's worth in common X71D0 is the code for shot with a crossbow individual events are traceable through their lifetime history and I'm sure you've not all been shot with crossbows but everybody has something that can be used and when you've got one and you're looking for somebody you can get everything what causes privacy nightmares is not the scale it's institutional secrecy it's hiding things from patients that might keep people up at night and it's one million people taking up the department of health offer to opt out of their medical records being shared and then not really do anything about it but the best way for bureaucracies to avoid nightmares is to not do the things that cause them for clinicians that's really easy the clinician talks to the patient and when the patient objects to something it doesn't happen the hard bit and the bureaucratic or commercial nightmare is for those who are far, far away from patients who don't really like individual choice don't really like the patient knowing what happens and not necessarily actively want to ignore it but don't actively want to do anything about it and the patient privacy nightmare comes not from clinicians but from people who don't want to care about the patient and who are looking to do whatever it is they do and that may be perfectly good but do we want everything to be done with everybody do we all want to be wearing the fit bit and that's often not a research agenda the researchers tend to want to do whatever it is their research is and only wish to research on people who've consented but they don't want to like have to deal with that that's something the system quotes take care of for them and researchers generally work for people if you want to work for people and to advance knowledge you go into public service and academia and if you want to do things to people you go into business or politics and it's the business and politics that incentivise doing things to patients it's why there are currently seven different projects on the NHS all trying to build a login infrastructure for the entire thing and none really are getting it right and none are really talking to each other the data was the catastrophic failure because it was doing things to patients not for patients if you told patients what you were going to use the data for they would have to have at least thought about it enough to write something down and because they didn't want to think of it they didn't write it down and then we went off to the races if you give patients a data usage report tell them everywhere data about them has gone and why and what was learnt as a result it's a full list with link to all the papers and all the research most people are entirely happy and go thank you for that and they will pay as much attention to it as you pay to your bank statement it's nice that it's there but who checks it every month and if you want to avoid a privacy nightmare it's not difficult don't keep secrets from patients give them information ask what they think and do with it the world contrast research published last week shows that you can't assume you'll agree with you but if you're open and honest about it most people will and that was the nightmare that covered care.data when they had to spend the program and that's still stuck every data flow in the NHS can be consensual, safe and transparent you can know about it, you can have a choice and it can be done safely and there are certain things you don't get a choice over yes if you have a notifiable disease I'm very glad that the authorities have to be notified and that's a good thing and we have a democratic process by which that's how that works the nightmare is for people who want to do things to patients where they really hope that the patients don't ever find out about and that's what hopefully we can avoid in the future very good Sam, thank you very much I've got this rather alarming mental thought of being shot with a crossbow for not wearing my Fitbit so I hope that none of us are in that position what a horrific thought you heard from Liam how important research data are for medical data for research vital for research, vital for care and vital for prevention I think a very persuasive case Peter talked about goodness 1 million people being seen in the NHS every 36 hours it's a staggering number and Peter you talked about how when you talk to the public about it they get it so this importance of transparency but finding the right sweet spot between better data and transparency of this sense of public benefit and Sam, then you talked very much about some of the difficulties in care.data and how important it is to find a consensual transparent model for the use of this valuable data what I think everybody agreed with was how important these data are and how valuable they can be used so hopefully we'll have a conversation in the discussion period but the how, not the why I think people believe that the why is important but the how is important to have an opportunity to charge your glasses before you stampede for the why use the five or ten minutes while you're refilling your glasses to think about some of the questions you'd like to raise some of the things you've heard for example who should have this data how will they use it how will those that want to use it make sure it's used how will those that don't want their data to be put in the public domain we've heard a bit about some of the issues around commercial companies having access to data both for drug discovery and possibly for insurance and marketing purposes we may want to think about that and then this really interesting debate about the benefit to me as a patient for giving my data or the benefit to society more widely of giving our data so there's some of the themes I hope we'll refer to in our discussion session it is gosh 705-ish if you want to take ten minutes to go and grab a glass chat amongst yourselves and we'll come back into debate mode at about quarter past thanks so much there are some roving mics going around I'd like you if you please do feel free to ask all questions put up your hand say who you are and if you can say that you're representing an organisation say which of the organisations but if you can't do that then just say who you are so lots of debate I know in the room and my goodness I haven't started good so thank you very much soul to the man over there so please microphone coming your way hi I'm Lluio I work for the British Science Association you've all kind of touched or hinted at what might happen if my medical data is shared but I just wanted to get an idea from the panel of sort of what's the worst case scenario if somebody identifies me from being shot with a crossbow and they get all of the rest of my medical data could you just lay that out for me in simple terms so that I can understand the very worst case scenario okay perfect Lluio how bad could bad be so let's start Sam how bad could bad be for you you're not a 15 year old Catholic school girl on the Pell and I know nothing about your medical details but it's a case of there are many things where what should your community think should happen what do you not tell people everywhere what is there that you tell people to basically make you better that you don't necessarily want everybody to know and where they will take action on that behalf and that's one example there are lots of subgroups of the population for whom certain things shouldn't do but that's things happen and I don't know what the implications will be for you but there are a lot of implications people with wives people with husbands families it is not the implications on you that your medical record is on the web but there are then possibly implications of what do the people around you know and how do they treat you differently and it is that that is the concern my medical record is basically empty and if that was on the web that would be unfortunate but I would probably not come to significant harm because there's nothing there but that's because I'm mid 30s male and lucky not everybody comes into that category and so that's sort of where you end up okay thank you Sam so Peter how bad could it get it's an interesting question I'm slightly interested in what Sam said a couple of points to what you've made first of all my record an interesting concept because we all say my record or your record it's an information about you that's the key point and we look at records as a construct of ownership it's quite difficult so you have actors you have people contributing to your diagnostic tests you have a lot of stuff in there so then it comes to what type of data is it and it's personal sensitive and how you protect it is an interesting point so if you're on Facebook your protection is the settings that you're given by Facebook and off you go and do what you want and people put lots of information on Facebook and they live with the consequences of that or they change it or whatever in the same way you've got personal sensitive data like your financial data which you wouldn't know to just generally be out there to do the transactions that it needs to do to pay people and allow you to buy things so I think in essence if they leaked the data you would have a concern about it but you've got to remember when I go back to what Liam said the amount of this stuff that happens is so miniscule and certainly in research terms I can't think of a single case where it's happened actually because the privacy issues and the bars that everybody goes through to get access to data is so high you have to demonstrate a lot of things and actually access to data through things like the information governance toolkit that's in the system is a mechanism for making sure that the security and all the things that you'd expect to be in place in there the question comes what if you share your record as an example and that could be a future position where you want to donate what's in your record to something but actually what do the recipients do with the data and what's the deal that you have with it so I think how bad could it get it goes back to that point how harmful could it be is the question and not knowing anybody in the room and not knowing anything about them you can't make that judgement it's a personal judgement for you you've also got to remember if you feel as though you've had harm you've got legal records so you have got both the courts and the protection act so let me come to Liam the question how bad could it get but we know the systems aren't perfect you just have to look at talk to know that systems break down all the time how worried should we be how bad could it be really bad I would hate my medical record it's not pretty boring too but I still hate it on the web why would anyone I'm the sort of person who might possibly be able to do that I'm sure you're absolutely fascinating but I can't really think why I would want to might someone want to undertake criminal activity and do it possibly how would they do it it would be difficult very difficult you've got other things to worry about that I would worry about instead it would be much easier it would be much easier to get into your bank account it would be much easier to find every email and social media message you have ever sent in your whole life including all the ones that you've deleted from any system where you were ever logged in as possible identifiable as you and every computer IP address that you've ever owned that would be much easier to get hold of so there are things to possibly worry about but I wouldn't worry about people who aren't very interested in you getting hold of your medical records worry about a few other things first great, thank you Lluia go on, loads of answers I've got a lady here and then a gentleman there so it might be friends coming your way thank you hi my name's Julia and I'm just a member of Joe Public who finds these events absolutely fascinating and it's a bit related to that really because I suddenly had a memory triggered in the first thing of an extraordinary letter I got from a south London hospital where I'd had a couple of consultations it was about three or four years ago telling me that my medical records were among some that had been stolen from this room and they went to great pains in this letter to say it was in a locked room that was only accessed by swipe codes this, that and the other and I was left thinking, oh, what am I going to do about this I mean if you're, and I don't know why would anyone want my records if I had entity theft, is it whatever and I've never had another letter so I don't know, should I be worried I've never been to that hospital and somebody said to me, well that's funny you came last week I don't know so I'll ask Peter to answer the question of your department yes, I also used to run a trust so I've known a little bit about this space in that sense 10,000 steps how did that work so where human error occurs you do get this thing and you do get malicious damage like that happening now, this was probably around paper records which was the key thing and paper records it's a thing that happens people do lose records I've got the feeling it might have been a disc but I wish I'd thought before I came even if it's a disc it's a physical thing that they would have to take that's the key point and you do get people doing that sort of thing you can't always protect everything all the time that's just a consequence of life the bizarre thing about it though is if it's on a control computer system it's in much more orders to put much more control actually and one of the things I found when we moved from what was records that were distributed and very much dispersed and paper based to sort of records on a centralized computer system within the hospital that control and lots of control mechanisms around it is the instance of those things happening diminished quite dramatically because the safety and control is much better and actually I think we shouldn't be frightened of that change between what is a manual record system and a digital record system the danger which everybody always talks about is that actually if you do get into the digital record system there's just lots more data there but it's dawnside harder to do so and I think that's really important to recognize that trade off so nothing's risk-free but there is a level of risk and it's the sort of the issue to do with whether it's a vast quantity of data or just a small amount and those things need to be investigated I've got to say now the structures of this are very very strongly controlled with trusts being accountable for that that doesn't say there's still no breaches and that's really important to recognize because that's just the world we live in but the information commission is actually very good at finding these things out and doing the organisations individually where there have been failures OK thank you so a gentleman here and then if we can keep the microphones coming to people have a lady in red next I'm Arne Walters I'm data manager at the health foundation interestingly I totally agree with you that probably your bank details your Facebook, your Twitter everything that you have a username and password to is much more easy to hack than health data being kept in a secure research environment used for specific purposes with a lot of controls around them therefore I was wondering what your view is about electronic patient records being available online through a portal provided by your GP practice and the only thing stopping people from accessing that is actually your own username and password that is as easily hackable as it is to get into your Facebook account so who would like to take that question boldly you've pointed me you're the GP a bit of risk transfer there so we'll go to Liam I think there's an example of this being an ever moving picture we put a keep up with the times here so I can think of myself as a human being as a doctor and think hey it's great patients being able to look at medical records whenever they want having them online for whenever they are useful whether they are on holiday or whatever that's great that seems like a good use of technology so then we've got to think okay what are the threats and we've got to make put in place adequate security let it know what risk they would be taking and we have to rethink things and probably like a kind of email using a password probably isn't good enough for most people I don't think it would be good enough for me personally so we need to move with the times here and think of a better security I think it's a great idea but I think we probably need some new things to do it Sam so looking at what is the state of the art for access username and password probably isn't enough but equally there is steps that you can take to protect some bits of your record and it's a process of is this turned on for everybody because most people don't care and some of going back to the point about the letter and that it's what level of information do you want what did that letter say that it should have didn't say that it should have said what is the is this you only hear about problems or do you hear about everything and as you provide more information you end up starting to sort of raise the level of knowledge of what's going on and if you can see when you logged in and you know that your username password hasn't been abused and your account access hasn't been attacked then that's useful to know that nothing bad has happened which is an absence of a problem which while it necessarily doesn't may give false reassurance on your password 1234 is fine well it probably isn't but it's a case of you can at least see what had happened and sort of raising the level of knowledge as to this is what happened to your records reducing the surprises is probably as important as anything else lots of people worry in the room that Sam's got their password Peter George coming up so I'm going to be the one of the few people that when it was possible to do it I went and said I would like to do it thank you very much and alright I might be an early adopter but that's fine the question is what's the risk benefit to me and that's the question I ask myself and the benefit is I can see what's in my record and if I did it any other way I'd have to put a subject access request in and I'd have to wait for the GP to send the record to me and it would just take a whole load of time I also did internet banking when it first came out and as that's developed that's got more and more secure with the new techniques and models that can happen so I think there's a process of learning that most organisations go through on this I think when Coltacott comes out there will be some views on that in that area but it's about making sure you've got proportionate right security levels in that you put the right authentication in I mean I remember the first one I had from my bank they'd sent me one of these calculators that I lost you know what do you do with that and now they got more sophisticated where they give you mobile phone apps which they're linked to the sites and things like that so you can see the generation of security getting better and better and better I have to say though talking to academics in the states where you know as much security is put in as many people want to try and hack the question is why they're hacking and it goes back to Liam's point what's the value in doing it financially there's a huge amount of value to drain your bank account medically unless they want a blackmail you unless they want to try and target you there's very little advantage in that sense so I've got the lady in red and then I've got the lady in red solve that problem please my name's Jennifer Boone I'm from the policy team at the British Heart Foundation so I have quite a broad question something I work on a lot is health inequalities so different outcomes for different groups and I think the interactions between the use of patient data and health inequalities are pretty interesting so we've talked about FitBits people talk about how a lot of people use them a lot of people do but they tend to be from specific groups we sometimes talk about people being able to edit their own records that's something that you would feel much more able to do if you're confident you have the access and then similarly when we're communicating about the issues when you look at the level of literacy and the level of numeracy in the UK population as a whole there's a difference between communicating with the people who are most engaged with these issues and communicating with everyone so I was just wondering if the panel could give us some thoughts on how we can maybe improve rather than worse and health inequalities by using large data sets and particularly your point Jennifer is about how to get to those people who aren't normal people that would come to a talk science event and you maybe aren't monitoring that perfect so Sam we have to start with that um I think as a national health service it has to work for everybody and that's not the people who are engaged it's everybody which means if you don't do anything that you are not put at risk you know care data exploited a million people and walked it out they probably shouldn't have had to go through the rigmarole of doing it and they did that because of that but equally if you look at the opt out rates you are entirely right it is more engaged than the other thing there's a the organization.everyone is doing some work around the NHS and the first they use is reaching the furthest first and the inverse care law completely applies to digital stuff how do you help the people who are least engaged how do you help them who are at the lower end of the socio-economic scale and that will have dramatic impacts on helping NHS budget pressures and everything else for various reasons and you are entirely right and they cannot be forgotten and they must be prioritized because if you can read your own health records you may do so but the people who are going to do that are either or do you receive me a lot of care and interested or just looking it's the people who are busy raising their families and doing a bunch of other things that you know the NHS should help in a way that they don't have to particularly engage with at the retail level but the underlying question I think there is also people who are less literate less digital literate how do you get them to really understand the information around transparency about how their data will be used so that when they consent or decide not to opt out that decision is truly informed what's your sense about that I will I hope that the CODICOP review and the subsequent consultation covers that there is no position yet on what the question should be once there is a consensus on is this the right question well how do you explain that in a way that the public can understand and I don't think that work has begun looking vaguely at Peter to give me a clue either way and it's a case of if it's too complicated it's not going to work and one of the processes I'm going to add to was if we don't tell people make it really hard it's not going to work and when they find out and people get really unhappy they go through quite extensive lengths and there are things that can be taken on for particular populations but look I would very much like to be in a position where the data-sharing was safe and consensual and transparent and the charities could say we have full confidence in you doing this for whatever your issues are and that's different from the British Heart Foundation to cancer to all the others and I think that's somewhere where I think the charities hoped they were two and a bit years ago and it turned out not so much OK, so what do you think if you'd like to come on this question inform consent transparency consensual use of data Yes, I think this raises a really important issue because I think health inequalities has got to have a way of being addressed in some way and the question in this space for me is how do you have mechanisms immediate in place to do that because and I relate it to a personal way of looking at this OK, so and I got a I ended up getting into an anti-crackling connect for a while and what struck me about that is we don't use the technology that's in people's hands today no matter what part of society they come from OK, the health system just doesn't do that and it comes back to what we were discussing earlier so I did the paper thing which is we're going to take your blood we'll take your paper away and mark it up and tell you what it is in four days' time and then we'll give you the book back and you'll be on this trajectory of medication and there's a great piece of work actually in the Office London which has looked at this where they've literally transformed it by saying you've got a mobile phone we're not going to do it that way we're going to do it this way now and basically they connect the person the unit that's doing this they give them the tools to do the job effectively in our tests and are making some for recording stuff and other Bluetooth devices that created the inequality bridge in a sense because I sat in that clinic as a person dressed in a suit, the only person dressed in a suit everybody else was either very old or you could see it was a different sort of structure and whether I'm prejudiced or not is not what I'm talking about here it's just the fact that actually everybody had a mobile phone everybody already had a device that could have something like that on it and yet we weren't using that technology to bridge that inequality which is frustrating I think is the key point and the more we get to that level of inequality bridge where people will actively know what you're doing with that sort of intervention and I think most people can see that actually when you explain it in that sort of way and then you start to translate that to well actually we did that by research which we need bigger sets of data to look at inequality people get it and I think that dialogue that public dialogue, that way of explaining it is really important and use real things not hypothetical things because I think that's the big change really OK thank you, Liam on health and equality it's like a different note, it's actually a research finding always good to disseminate a research finding in using anonymised data this was just something we came up with last week so when people have diabetes it really matters what their sugar level is and that gets recorded in your medical records and we did this big and it's of huge international importance and there's huge debate about what the best level is to try and get diabetes away their sugar is there international conferences about this people of scientists always heated debate, I've been invited all over the place this is obviously this huge debate and we did a study using anonymised records and we were looking among people with diabetes at their sugar levels and who had the worst outcomes in terms of heart disease and deaths and we were interested in all sorts of things is it 6.5, is it 7, is it 6.2 and all this sort of stuff and then we were interested in ethnicity and is it worse people of south Asian origin and all this sort of stuff and what came out of that because we had measures of socioeconomic status based on completely anonymised of where people live and people live in poor areas or rich areas whether they were very poor, middle or rich and what came out far more important than anything was having missing data so the fact that you weren't getting your blood sugar measured by your doctors that you weren't turning up to your blood sugar measured was far more important than any of the biology which is that there have been huge international conferences about whether it should be 6.5 or 6.8 what really kills people is just not having it measured and guess who wasn't having it measured people living in poorest areas and we just got that from anonymised data millions of records so just not going to the doctor having blood sugar measured sweeps away all the biology and all these international conferences could turn their attention to how do we get poor people to come and get their blood sugar measured OK, thank you, that's the research life so I've got a lady there I've got a lady behind there and then I've got a gentian check shirt on that side Hi, my name is Aura Grant I've been a critical care nurse I've also worked in the pharmaceutical industry as a project manager in clinical trials so I get the whole anonymised data bit I've lived it for more years than I'd cared to count relating to Jennifer's point as well I think for me as with many things within our healthcare system which are great, we need to take the emotion out of the equation and for me, I guess the question is what's the best point of access for perhaps the less literate educated population is it the GP's office the arms will go up in the air but with the new changes and clinical commissioning groups GP's offices are inundated blah blah blah we also have a wealth of very well educated informed volunteers that perhaps could help man some kind of initiative whether it's giving out an information sheet but discussing it for those people who perhaps their reading skills aren't as great as they could be that kind of thing we take the emotion out of the equation and clearly explain as you do in a clinical trial informed consent or an academic informed consent the purpose, the risk, the benefit I think the general lay public will be more open to having their data anonymised encrypted however you want to deal with it in relation to research and the healthcare system and perhaps more weary when the big government word comes into play big brother is watching you blah blah blah ok, thank you very much for that some very interesting points there raised by Zara about tackling taking the emotion out of things but also a very interesting comment about GP's, GP's are fizzy they're under pressure, they've got loads of stuff and last time in care.data it was GP's also who were reluctant to have data shared or their patients data shared so I think there is something there that I should comment on I don't know whether PT wants to go first but we will talk about particularly getting the GP's on the side so ok, so I've got that so I asked you to be brief because you've got loads of information so it's interesting because I welcome what the BMA has done recently which is get together and just think about this whole conundrum of sharing and not sharing and getting a policy together which is consistent because the BMA is composed of two different types of groups there's the academics on the side of but also he's a GP and there's GP's and they have different views and we have almost a patriarchal model of wanting to protect our cohort of patients but at the same time we need to think about disease management and disease prevalence and how do we get to the cures we need to get to so there's that conundrum we have to deal with and I think for me that change of view from the BMA and how they're trying to be consistent in their thought process around this policy is helpful and I hope that has a sort of cascading effect into the environment because yes, GP's are busy but GP's also look after patients every day and it's their advantage to know what's the best treatments and should be there for individuals whether they're novel treatments that are just coming through the pipeline or whether they're really well established things which people can deal with and that's the balance Sam, getting the GP's on the side They were right The clinicians are the people who do the patient primarily trusts and it may be 5% of the clinician time and go talk to the nurse about this but it's a case of if the clinicians aren't on board you're probably fighting the one fight Okay, let him finish his sentence and you can come back in Go on, finish your sentence I find this quite interesting having dealt with patient groups on this there's a lot of patient groups who say I don't want the GP to do that screening for me thank you very much and I think we let's not try and be black and white about this because actually there are lots of shades of grey around this and there's a lot of active positive patient groups who actually find GP's being a barrier to getting into that structure and I think we have to listen to all those voices we can't just have one dilemma on this Okay, so listen to patients and listen to others so I have a lady there and then the gentleman check shirt please Hello, my name is Susie Edge I'm a philosophy student from Kings College London and I think it's arguably we have a moral duty to prevent harm to others and as all of you have said tonight we have the ability to give away our data and save many lives or improve many lives but obviously there's the conflict with privacy and we want to keep our privacy or maybe we just don't want to know about ourselves and we have that right not to know as well so I was wondering if you thought we have a moral obligation to share our health data and if so in what cases so do we have a moral obligation to get our genome sequence with rare genetic diseases can discover the cause of their disease or do we have a moral responsibility to share our genetic information with our partner who we plan to have children with so that they can decide if they want to have children with us how far does the moral obligation go and in what cases does someone have a moral obligation and what conditions may exempt someone from a moral obligation sorry, lots of information Great question Thank you Oh thank you I'm doing my dissertation on this Sorry You can cite us So Susie's question is about the moral obligation to share data when you respond to that also try and tackle the issue of opt out if it is a moral obligation people have the right to opt out so let's go that way So we go from take the emotion out to moral obligation So I have some friends who have HIV and some of my friends believe that HIV should be a chronic condition like anything else and they publish their medical records because they want this condition to be made less bad and sorted and treated faster and I have other friends who also have HIV who have the opinion that there is social stigma around it there would be direct harm to them if people are around and they want to keep it completely silo and things and the thing is they're both right there is no way to do this at generic level so in terms of how do you do the right thing for everybody the individual has to have some level of choice and as to whether or not you should I have a friend who is an investigative journalist looking at pharma and pharma studies called bribing and corruption and hopefully they don't see me GSK and it's a case of how do they protect their family because everyone knows that that one of their family has a condition it's relatively rare, I don't know enough how do they basically protect their medical records from going to the people they are currently investigating and there are lots of other odd cases like that domestic violence of of the ex-wife of a medical researcher you end up with a bunch of things and the only way to deal with that is that the people who are concerned for the whole range of idiosyncratic reasons that humanity comes up with have to be able to take steps otherwise you end up having to deal with that at a population scale which means you can't do anything because all of those could be anybody you're not being able to send data anywhere because you're terrified of relatively rare occurrences and in some ways the opt-out rate is how many people got nervous about what you were doing and officially the care.data figure is about 3% it spikes to 15 and it's a case of the better you do the more safeguard you put implies the more confidence you built the smaller that number should be that's basically a short version of what may be your dissertation I'm happy to chat afterwards if there's more detail no money to change hands though so Peter is there a moral obligation and where does the opt-out sit? so the moral dilemma thanks for that one it's interesting because you've got to start with moral context and I think that's really important and depending on what your both your context is for the nation that you live in and the individual it becomes a very interesting position so I'll just think about the negotiations around the general data protection regulation where if you go north of us into the Nordic states their moral obligation is to share everything and they get on with it you go south you don't because of history and all sorts of things so there's a context and I think that's really important to recognise I think there's that debate between what you as an individual take out of society and put into society versus what society does and that's a really difficult line because there's lots of different views on that and everybody in this room will have 150 different views about that I think there are three things that I think are important I think there's the moral obligation which allows you to contribute to society which is your choice about the level that you take to that however I think that moral obligation in an educated society is much higher than it is anywhere else in that respect so contributing your data to doing something worthy of research actually is worthwhile the next obligation is that society maintains and manages that appropriately and I think that's their moral obligation and then finally you know if we don't have that sort of deal on the table in the sense what we end up with is either stagnation in what we try to do or what we get complete chaos and actually what we need is a balanced view of it so that view is actually to the value in what we do as a collective a society contributing my data contributing my genome and there's also that point about which actually you need some protection and I agree with you on your friend who's got a similar friend where they've got so different views about it you kind of go which is the right one or not that's the subject for the moral maze I think Liam I'll try and be brief but I'll start with going back to the beginning of humankind and there we were hunting and gathering and then we invented agriculture so maybe we could stay more place and therefore cities started to be developed and everyone realised they're really social beings and we like living in societies with other people and we get huge benefits from that does that bring with it the responsibilities I think it does should they be legally obliged I don't think so what I would like to think is that we can make sharing your data for the common good a cultural norm so I'd like it to be a cultural norm so if you know let's take take it out of health just to be slightly less emotive values but go into education which should be as emotive so people's kids sats results and their test results are used by public education to look at how schools in different areas are doing and all this kind of thing might apparently legitimately want to opt their particular child results out of that kind of analysis I guess probably yes there probably would be some and probably they should be allowed to I hope they don't I hope no one feels the need to do that I hope people feel it's a cultural norm that we use these data for the common good we use these data to figure out if vaccines are safe and what's the best way to treat stroke to people who have opted out of having any of their data involved in that process should they not be allowed to have those vaccines should they not get the latest road treatments I think they probably should I think it's okay let's just hope that 99% of people buy into it and it becomes a cultural norm rather than a legal obligation Let's just do a poll in the audience who thinks there is a moral obligation to share your data 50% think not we've got obviously more work to do to persuade people of the cultural norm so I think I've got the gent in the check shirt and then I've got the gent in there, yes good Hi, I'm Josh PhD student at the University of Manchester you've spoken a lot about the Fitbit and you mentioned that app which can tell you if you're going to have a heart attack and I'm just thinking it obviously these health apps very profit based so looking at it from the other side what is there these companies obligation or responsibilities to give the information back to the individual that provides it Okay this is a very good question and I think you referred Peter to the Wellcome Trust report that was published last week which said that people are very keen to share their data but the thing they're most worried about is industry and particularly the sort of non-medical uses so really live issue what do we think about this you would like to come in on this point industry that was a yes so Peter and then Sam happy to So I'm the guilty part of introducing Fitbits and apps and things like that so interesting dilemma this because actually you buy it the health service doesn't give you a Fitbit you buy one you buy it you enter into the deal with Fitbit and you sign up to the terms and conditions of it the question is what do you demand out of that and that's the interesting question because at the moment there's no right for anybody to I have no right to have a look at your data and see what is happening on Fitbit you choose to do it between you and friends and Fitbit has some sort of legal review about what it can do with your data for analytics and all that I guess this is a dilemma which we're going to have to face about how we deal with it because I know Google at the moment are thinking about their equivalent of what Microsoft used to have of health vault you lodge your stuff in there and then you have a right to decide where you're going to share that to but at the top of the end of the deal they've got a right to do some analytics over you so I think that's going to be an interesting stage that you make whether we get into that in terms of how the health service deals with that or not is yet to be worked out, understood defined in some respects I guess my biggest concern in all of this is how reliable is that information and what's the provenance of it that's what I'm always going to be worried about because I think we were discussing and there wasn't, there was another friend of mine earlier say where we were discussing these are actually some quality around them and there's some structure around them where you can go and buy the ones from China which are just a sort of cheaper version of this which we don't know are they accurate what's the testing that's been put around them what's all of that sort of stuff and there's going to be a dilemma around this at the moment I think you're right so the question really is and you may want to come back or we may hand it over to Sam if we have assessed that there probably is a cultural normal and moral obligation to share these data and these buy companies for potentially profit making things does that change our rubric does that change the way we look at it I don't think welcome found that welcome found is if you sign up to Facebook you know you're doing the deal with the devil in their head that's the sort of deal you're doing because you want the service, that's what you want so you're prepared to do that trade with this empire of of Facebook incorporated and all that I think the dilemma comes everybody sees the NHS as a good thing generally and therefore would it do the same sort of deal and that's a really big dilemma and I think we've got to find a way through that that gives that right balance because I think that's a difficult area and as I say you're starting from the other end of the spectrum where you're signing up with the company he's created them not the other end of the spectrum where people are bringing stuff in so Sam we give our data to the NHS if it goes into ministry how worried should we be um I think there's a thing you chose a Fitbit, you didn't choose one of the Fitbit competitors you could have done and there's some market forces there but it comes down to context you give your data to Fitbit for that sort of thing if it suddenly started showing up on Twitter randomly because every so often it tweeted it and you had no control over that you get quite unhappy but it's a case of and you may give it to the NHS for your care but how much of that and that is a going back to the previous very good question is part of the settlement and there's a pharmacy called Pharmacy to You and basically they had very in their terms and conditions that if you click through two links and two check boxes you could opt out of them selling your names and addresses and the people who bought the names and addresses is actually quite interesting because they weren't after 20 somethings the people that the people at the front of the queue for this data were Australian lottery fraudsters and fake medicine pedals and it's like why were they there and they weren't asking for the 20 somethings they were asking for the over 70's they were asking for the people with impairments and so some of the uses that this data goes to in the first instance is probably going to be maybe places you didn't want it to go and how much attention did you pay and there's going to have to be some form of assessment made as to one of the bits of work that was at a meeting Peter and I were at earlier today was what should happen about apps and these devices and it's currently a mess because nobody's quite sure how it plays out and what should the rules be for should you be able to get a fit bit on the NHS cheaper and easier than measuring everything but what happens to that data and who gets any say in it and should you have to if you're going to use Facebook you have to give your data to Facebook that's how the system works if you want your kidney function to be measured should you have to give it to the company that sold the NHS the kidney machine and some of them do and the NHS gets a discount and they hand all of the personal data over to the company that made the kidney machine and if we keep doing the question you will end up making rules based on pharmacy to you who sold data to people they probably shouldn't have and I think addressing that in a much stronger way is probably necessary but it's probably not going to happen till there's another disaster OK let's hope it's actually a I'll talk about a specific example big pharmaceutical companies now I'm sure there are some really nice people who work in them and I'm sure there are some really horrible people who work in them and they do lots of horrible things but I would probably prefer if it wasn't the case but only pharmaceutical companies can afford to develop new drugs the world is running out of antibiotics at work we need new antibiotics at work if I get some resistant infection I want a new antibiotic that works and the world will provide that in the future so should they be allowed to use my data to help them I think probably yes of course they should on an anonymised basis in a population way for population benefits should they be allowed to have my data knowing it's me in order to sell my data to someone else in order to do something to me like sell me personally their drug or whatever it is I think it is a matter of if you want the benefits you take the small risks that are there and you take the possibly unpowerful things but it's about distinguishing potentially quite individual harm which I think we can control and get rid of and saying okay that's okay we can use your anonymised large scale data for public benefit then I think it's okay with these companies I don't think we've got much choice and I think you're entirely right that the people who do the research are things why we're running anti-products we had one and then the commercial incentive of the pharmaceutical marketers was to feed it to pigs so that they didn't get sick and then we got anti-bacterial resistance for the last remaining antibiotic it's not just the research there are a bunch of commercial imperatives here which are not let's make the human race safer and healthier it's a lot of the time it's how do we make money in the short term are there other questions for the commercial pressure at warp speed warp speed just the citizen's duty actually the dialogue there which is going back to what Liam is saying is actually when people understand why pharmaceutical companies need that population data they very quickly move into that space of saying actually that's a good public benefit it's the other stuff that they don't want the insurance companies and the way that individuals could be focused on per premium I'm a school governor local councillor and member of a health and well-being board and I wondered what we should perhaps be sort of saying to our children at PSHE lessons of primary and secondary school and is there a role perhaps for health and well-being boards as the local health system leaders to perhaps try and say it rather than Nikki Morgan as secretary of state for education okay so what should we tell the children get them young I'm going to ask the panel to be really brief because I know there are other questions so Liam what should we tell the young the most important thing is that an individual's health data is as we've talked about is just one part and in the future is just one small part of their important digital existence and so this is a part of so you know your health data are private they're confidential there may be situations where they get used an anonymised way in the same way I think the young people need to know everything that's going to happen to all their bits of data all those snapchat things that they think disappear forever and don't have to disappear forever everything there's so much I mean it's a bit overwhelming that so much for them to learn and it's moving so quickly I think we've got no choice and I would put the health data in there as part of the new digital world they're going to grow into so as we educate children on citizenship we should educate them on data use and I think that's really important to educate them on why research is important actually because those are the fundamental things that change people's cultural norms over time so those are the things I would be focusing on very briefly people who are digitally native and very young actually look at this slightly differently they see the youtube pre-roll ad as something that they have to waste 30 seconds on and ignore so they can watch the next one direction video and I think there is if you are very old somebody has sent this to me they've taken the effort to contact me I should look at it because it's a very different way of looking at the world and there are several of them and I think recognising it's different for different people means different things work and different things are necessary so I've got three questions I'll take them all together so we can answer if I've got John there Lady in green and Lady in blue John John I'm from the medical research council but I'm specifically not representing the medical research council so I think you all rather charmingly started by saying that it's entirely possible to have better care and privacy but you're sort of I think being rather absolutist about these things and many of the researchers that we deal with tend to say to us well actually we're not interested in individuals first of all which is great but if you think about it for just a second there are clearly things like rare diseases where actually it's like Sam's crossbow it's virtually guaranteed that you're going to identify that individual and my question really isn't it's harder than I'm afraid well there's going to be a compromise between absolute privacy and absolute improvement of care so how much improvements of care are you willing to sacrifice to protect privacy and vice versa so how would you personally decide if I know you're not ethicists but if you're not ethicists who should decide to make that decision to the public so that they can come along with you with the journey? Very good, so some time to think about that or I'll go to the lady in the green I'm Liz Hoffman from Biomed Central and we've been talking about the UK as though it's sort of an isolated country there's no other countries involved but we've also mentioned the Nordic countries where they've been collecting this data for I'm not sure how many decades do we have a best practice example that we can use or a worst practice example we can use to decide what we should be doing because nobody's talked about any actual existing examples? Okay, very good question Thank you, I'm the lady here Thank you, Tanfi Dassai one of the directors at the Administrator Data Research Network and one of the things that I'm kind of is kind of ongoing worried about but there was a statement made early on in the piece where it said, are health data special? Yes I've got concern about that because I think that attitude leads to putting health data in a silo and actually a lot of the issues around data protection are common to all data and a lot of the challenges facing our society at the moment are absolutely on the socio-medical kind of link so saying health data is special and removing it from that kind of whole spectrum I think it's potentially very damaging to improving our society in two research that will kind of really give value so I think kind of saying that health data in a way that it's an easier sell it's easier to say to the public if you make your health data available I can make your life better than saying if you give me your tax data I can make your life better it's a much easier sell it's not necessarily true that only health data can do it so I really think how can we start thinking about data as a spectrum more widely rather than individual types of data separated? Okay, very good so three last questions there are we being too absolutist about it when you're in rare disease cases will we use what how much privacy we trade for better care is anyone else doing this better than us in the world and this issue of that it's a spectrum and actually health and social care is the poorest boundary between them we may not think of them as special so who would like to start me off on that thank you is somebody else doing it better than the world hopefully because we're screwing it up on terms of rare diseases those cases people have great deal of treatment and you actually have more time to talk about particular things especially when for very rare conditions the people that are treating you are the same people who are doing the research because there's only five people on the planet who do it and it's that small and possibly on the final depressing note the NHS is actually not worse at using data than anyone else in Government we just noticed first and cared more but it's a case of the national people database of 20 million citizens in it you really don't want to know where they sent it and you don't really because you can't because they didn't really keep track and it's a case of it's probably not a good thing but I think what we do in the health space will influence what we do elsewhere thank you Peter so on John's interesting question around are we being absolutist I think rare diseases are a really interesting area because it illustrates a key point it's about context actually because I know a lot of people with sort of rare diseases area where actually they absolutely want their data to be used they absolutely want it to be used because actually there's no way they're going to get a cure otherwise or at least a treatment path and they are probably one of the strongest lobbies in that space so it goes to that relative of context about where you are and if you're a healthy 50 year old who doesn't have any problems and you go running every day and you don't see the doctor for years on end then fine great you probably have no context really interested in that I have to say I was getting older you have more interest but I think where you've got specific diseases like that cancer is a good example heart disease all of these diseases where people have a very clear interest there's a very clear context for it and I think then the trade-offs change in some respects actually that's what Redsies wishes in that respect and where Redsies is concerned the lobby in terms of the patient population is very strong so I think there is a deal there how would I make that? I'd probably make it on that basis that if I personally was affected I'd have a different view and generally I'd like to hope that generally I'd contribute my data because it's a worthy thing to do for society so that's the sort of better role models I kind of disagree with Sam somewhat I think there are different again contexts of of population and culture which sets up different types of arrangements in the world and we can learn from a number of these actually saying that I don't think we're as bad as everybody tries to make out and I'm really sorry about this but if you think about it a few countries that has a whole health system in its creation we have you've got 54 million records of live individuals and then you add in all of that history data that's over the years that we've got and actually yes there are issues but there are issues in every system what we need to do is learn what the best things to do and how we apply them and actually I don't think we're not at the bleeding edge we're leading quite a lot of this and I think we should be proud of that actually as a nation briefly on the third on the third question about briefly sorry the question about this dilemma the question seemed to say we talked about special cases not special cases I think we ought to differentiate between what is personal data personal sensitive data and I think that's what you were trying to say because actually personal sensitive data is different personal sensitive data it has a different level of view of it and that's what health data is considered to be and it's not about difference it's about handling and I think we've got to be really clear about that so you put different handling mechanisms around it to make it more secure and more structured that does not equate to utility of data being used for research and other things because you can make those handling processes work so I think we shouldn't talk about special but we should very really understand the type of data we did thank you so briefly not being absolutist I'd agree that it's probably possible for me or someone clever who works for me to take anonymised data and possibly identify people with very rare conditions or particularly unique combinations of things why would they want to if they were doing it for I don't know idea they were doing it for any malicious purpose what server and weren't doing it for legitimate research purposes they'd be committing a criminal act and they were all sorts of safety guards against that the Nordic countries I think we can learn a huge deal from in particular I think just this cultural norm that research will be done to benefit society that's quite a short cultural norm it's a good one I was the one who said a health data special I'm basing that on people's perceptions I think people perceive their health data as being a special case I think my argument would be rethink that one your tax data are pretty personal and pretty sensitive I really really hope the government are using your tax data to run the country because if not we are really in trouble really in trouble and in fact I think you know they're using your tax data and people just don't object to that I'm going to ask you to the parents to come back with a closing thought they'd like us to leave the room with today but before I do that can we just have a last straw poll after what you've heard today how many people in this room would share their data for research anonymised anonymised data a few more hands going up how many people have changed their minds since they came into the room there's one there thank you very much ok so we were preaching to the converted what's this the last thought you'd like to leave our converted masses with Sam let's start with you the work on trust report last week which if you want to 200 pages of this stuff is is the idea of context collapse which is you did something in one place and it turns out it happened over there and people get really really unhappy about that and you know share your data research so on is that a surprise and the short takeaway is don't surprise patients ok don't surprise patients Peter so I think the debate has been really rich and I think for me the key thing from my sort of thoughts around this are actually this educated dialogue about what we do with data and how we use data and what we get the benefits both as an individual society and the system get out of it is something we need to just engage with on mass because I think the more we do it the clearer the transparency gets and actually the more people want us to use data in the way that Liam needs it every day to get insight and understanding Liam your takeaway I don't think it's an obligation but I think we all have a responsibility to use data to improve society to use our own data to improve society and the scientists and clinicians and everyone else we have a responsibility to look after people's data keep it safe keep it secure keep it confidential and that's our responsibility and I think that's what we need to work on and keep working on and it's never changing field and we need to keep at it Ladies and gentlemen thank you very much that's the end of these evenings proceedings I'd like to thank you all for coming this evening and for your great questions and really interesting debate I'd like to spoke a special thanks to Eleanor Sherwood who I'm delighted to say is an MRC fellow for organising this event and thank you to the British Library for running this great series of events and most of all, thank you very much to our panel for their comments and for their robust discussions if you'd like to join me in thanking the panel