 Welcome to this EduServe Executive Briefing Program webinar. We're talking today about data ownership and consent to shared data in care services. It's a key and complex issue in integrated health and social care services. My name is Josh Crease. I'm the principal analyst for EduServe and I'm going to be chairing this webinar. I've worked across health, social care services in the local and central government for many years, much of which time was spent trying to tackle this topic. If I can just hold on a second, move on to the next slide. Here we go. Hopefully for those of you who are joining us and we've got nearly 100 expected to join today, so welcome to you all. You will have a chance to participate. In fact, we want this to be interactive as well as informative and informal. So if you could use the raise your hand button, if you can see that, there's a little hand in a blue blob. If you just click on that, that will indicate to us that you can hear this audio. And then also you will see on your screen, answer a question. If you have questions, and I certainly hope you will have, answer them in that space, and that will alert us. You can indicate who the question's for if you wish. There is a likelihood, given the number of people on this webinar, we may not be able to get through every question, but we'd still like to hear your questions, because we will be doing some sort of write-up from this, and it will be good to understand what your views and ideas are. So let me introduce our expert panel. We are very fortunate to have four industry experts in contrasting and differing professional fields. We have Dolan Roberts, who is Chief Digital Officer for Leeds City Council. Dolan's experience includes work on the Leeds Care Record and Ripple, a demonstrator project hosted by Leeds City Council that's building an open source digital care record platform. We also have Jocelyn Palmer, the program manager for Connecting Care, Bristol North Somerset South Gloucestershire, which is a nationally recognized and innovative health and social care program, and a partnership that spans hospital trusts, local authorities, over 100 GPs, mental health, out-of-hours, and community health care providers. We have as well Dr. Imea Hanan, who is a full-time GP at Horton Formally Medical Center. He is very widely known as a pioneer of patients having access to their electronic records. He has also met other positions, Director of Orbit Health Care, Chairman of the West Pennine Local Medical Committee, also of the Association of Greater Manchester Local Medical Committees. He's a member of the Equality Diversity Council for NHS England and a chairman of the World Health Innovation Summit. We also have Tracy Egerton as policy officer, Public Services at the Information Commissioner's Office. Thank you very much. We're back with the screen. Sorry for that small interruption. These things happen on live broadcasts. So, Stacey works with organizations across health, education, and local authorities to provide guidance and a breakdown of some of the misconceptions about information governance and information protection, which often gets in the way of information sharing. So, welcome to the webinar. The EduServe Executive Briefing Program sponsors a whole range of research, and on this particular occasion, we want to look at integrated care, which has never been, I think, higher on the agenda. The public are demanding it. It's a stated government priority. There are enormous service pressures facing social care and also our health services. Almost daily we read about this in the press, and we know that digital and data sharing offers some solutions to that. And of course, we have some major technological opportunities. But the key challenge behind all of this, in my view, certainly, is data. It's about the quality of data. It's held in many different formats in many different organizations. It's about data being owned by all of us. Increasingly, our wearable technology, let alone being in control of our care records. But what are the risks and the responsibilities, and frankly, are the public ready for this? There's then the security, confidentiality, the need to set standards and levels of control, and of course, the vexed issue of data sharing across agencies. How do we do this with so many systems and data locked into organizations and yet ever changing and ever expanding? We know that many national programs, especially in healthcare, have struggled. We've had care.data connecting for health, NHSIT, just to list some of them. There's also an importance of not undermining the duty of care that health and social care professionals actually have by simply making data available to everyone. So what should be the role of government in setting regulation, national programs, standards, policies, guidance, national strategy, whatever it is, what should be the role of the government in defining these new data-driven care models in the future? And we know in particular, it's going to be about trust and it's going to be about complexity. Public trust and the trust of professionals in how data is collected, in how it's stored, shared, and used, and avoiding the complexity where we can by not over-engineering solutions. For example, care.data was in my view very well-intentioned, but it was about electronic records, it was about a single care identity, and it was also about the need to share data for certain other purposes. That made it a highly complex and difficult to understand solution, but also it was one where public trust and the trust of professionals was not gained at the outset. So the Edgyserve Executive Briefing Program Research has looked at the topic. There are two reports you can see on the screen. They are freely available to download. Each of them looks at the challenge of integrated care and also the elusive digital opportunity. It's freely available and there are some key findings that we came up with within that and I'm sure our panel will go through some of these points. The first is we believe that place-based and user-centric care is essential in the way we design, in the way we resource, in the way we define our technology and the prioritization of programs. And that means, for example, that a concentration alone on primary and secondary healthcare is a mistake. We will not solve the problems of pressure on care services purely by pouring more resources and more prioritization into the very front line of those services. We need to look at care in a much more holistic view in the future. Well, that's my introduction. So let's get going by hearing from our four experts who are gonna talk about different areas with their views and experience of the challenges and opportunities of data sharing in care. So, first of all, let me welcome Dolan. Robert. Hello. Hi, Dolan, over to you. Okay, good morning, everybody. Yeah, my name is Dolan Roberts. I'm the Chief Digital and Information Officer from Leeds City Council. I guess one slight difference in terms of my role is that I'm lucky enough to have responsibility over not just the council, but also the three CCGs informatics work across Leeds. And in particular, many of my objectives in my appraisal are around delivering particular city-based outcomes across our partnership in Leeds. So from a health and care point of view, I've got some particular outcomes around delivering on better health and wellbeing outcomes around prevention, self-care, integration of health and care services across localities, and also some objectives around making organization more efficient and effective across the place, which is Leeds and also West Yorkshire, which is our sustainability and transformation plan area, which is one of the NHS England's initiatives for delivering integrated care. So what I want to do today is basically go through a few slides just to explain some of the things that we're doing in Leeds and to provide my point of view, and then hopefully we'll get some questions and a wider discussion as we go. So as Geoff's has already alluded to, you know, public service is in crisis. I mean, in the Leeds context, the health and care gap in Leeds, and the health and care gap figures are published from lots of places. Well, the health and care gap in Leeds by 2020 is just over 800 million pounds. And what that means is if we carry on delivering services as we have always carried on doing services, if we just carry on delivering health and care services we always have, with the exponential increase in demand on those services from people with long-term conditions and the like, we will have that type of financial gap. So therefore, we have to flip our thinking altogether and think about new models of doing things. And I think it's really important before we get into any conversation, whether it's about data sharing or technology or whatever it is in this field. We've got to remember that this is the means to an end, not the end itself. So I think it's really important to understand the context within which we're working and from that what some of the strategies and directions are that we're hoping to enable. So therefore, you know, what our approach to information sharing has to be aligned to what we're trying to achieve as a system. So the first thing I wanted to do was just to put things into context, really. And this is basically my base understanding, which I'm happy to be challenged upon, around where we are right now in terms of information sharing across the health and care system. First of all, as it relates to direct care, so that is where health and care professionals, whether they're in social services in a local council or in an NHS organisation, have got a legitimate relationship with a patient or a client and they are providing direct care to that person. They have the ability to share information. In other words, they do not necessarily have to ask for consent for that. That is resolved through statute, which was through the Health and Social Care Act 2015. So therefore, as far as providing direct care type services, you can, through statute, share that information for those purposes. There are some complications around that because the latest Codicot Review talked about duty of confidentiality, which is a health thing which leads into things like the Hippocratic Oaths and all of that type of thing. I'm not gonna get into all of that now, but maybe we can get into that as part of the conversation, which can sometimes confuse things. But as far as providing direct care, if, and certainly from a lead's perspective, if we're providing direct care to someone, we believe through statute we are able to share information for that purpose. The area where we've got the biggest issue is where we are sharing data for secondary purposes. And secondary purposes is where ultimately we might be using, for sake of argument, data for research or oversight. And by research and oversight, in many cases, the purposes that we would be wanting to do that in leads, for instance, would be to be able to potentially identify patients or people who may be at risk so we could prioritize investments in certain parts of the city based on maybe preventing people getting into diabetes or particular sections of care or whatever. Fundamentally, the use of data for secondary purposes is where we sometimes come unstuck or have some challenges in terms of an ability to be able to legally share that information. So fundamentally, my understanding and what we're doing in leads is that every data flow that we do in leads must be considered on a case-by-case basis. And considered by who? Well, ultimately, considered by the data controller and from a data protection point of view, that is ultimately the person who is the primary sort of controller of the data or the holder of the data. So for instance, from an NHS number point of view, people might have heard of the, well, the nonsense that's been going on around the sharing of the NHS number. NHS Digital, who are a health and care organization are the data controller for the NHS number. So there's been all sorts of issues around how we can share NHS numbers, for instance, for secondary purposes. So yeah, so I mean, there is, and there are various models and we can maybe get into these as part of the conversation whereby we can use different tools to anonymize data so that you can combine data in order to be able to derive better insights in terms of how your system's working and the like. However, what that can be is identifiable. There are other techniques, of course, where people might have heard of the term pseudonymization and that is where basically data can sometimes, for certain purposes, be codified and almost anonymized but it also comes with a key so it can be re-identifiable once things are transferred across. So there are different methods by which tools we can use to use data for secondary purposes and do so within the law. And I think it's also worth noting that where things can get quite confusing is that as well as the Data Protection Act and things like that, which are clearly legal and statutes, what can confuse things sometimes is you also get outcomes from things like called a cut review. So sometimes you get a health view on things and sometimes you get that, not conflicting with the law, but basically you get the two things side by side and both things need to be considered. And what we've also got, which is going to present even greater challenges is we've got over the horizon, we've got the GDPR legislation coming forward, which has come from the European legislation. So a lot going on, I just thought it was important to set that baseline, but what I will say, and Dame Fiona says herself, which is that little quote at the bottom, at the end of the day, the duty to share information can be as important as the duty to detect patient confidentiality. So I think the big thing there is, is that everyone recognizes we need to sort this out, everyone recognizes in terms of delivering government policy, in terms of delivering the outcomes we want to deliver, information sharing is key to that. So in the LEED system, coming back to our outcome-based approach, what we're focusing on is on Bob there and what we're focusing on is improving the health and well-being outcomes for Bob. So as opposed to Bob being seen, there's lots of different, a collection of different parts, dealing with different parts of the health and care system. What we're focusing on in LEED is flipping the approach, really, and looking at how can we enable Bob and potentially his circle of care to make Bob more self-sufficient and frankly be able to look after himself, but in particular, when Bob actually comes into the care system, that that care system is seen as one system and we've got a combined set of information potentially of different partners around Bob, so we're providing the most effective care. And ultimately, when we talk about the care system in LEED, we're not talking about traditional NHS or local government organizations alone. We're talking about a combination around Bob, who might be sitting in the middle there, but we're looking at combination of families, friends, caregivers, home care workers, volunteers, et cetera. If you use LEED as an example, there are currently 92 voluntary sector mental health organizations in LEED working on different aspects of mental health who are providing care right now. So when we consider the information sharing legislation or what we want to do around information sharing, we also can't just consider health and care organizations. We have to think about arrangements for a wider set of organizations and providers and also think about arrangements whereby Bob himself, in the center of that circle of care there, Bob himself might generate and hold his own information and his families and friends and caregivers and the like will have that as well. So I think it's really important to note that this is not just about integrating health and care organizations as in social care and NHS organizations, it's about integrating that whole system. And the LEED's approach to that, basically, is that it's twofold. I think, first of all, I do believe that and LEED's believe this as a whole that there is opportunity for simplifying and standardizing and sharing a lot of what we do. One of the things we do not want to be doing is duplicating what we do in different places. So, you know, LEED's are absolutely committed to that and I link into national organizations such as the Pioneer Network for Health and Care. I chair a group called the Local CIO Council which has information and technology leaders from across the system and link into organizations such as your SOC team to this world and the like. So I think one of the things we do in LEED's is when we develop things, we are really keen to be able to capture those things so they can be shared in other places. So what I'm showing on the screen there is that in terms of our integrated digital care record approach in LEED's, we have got for direct care purposes and I think it's important to reiterate that. So for direct care purposes for which we can share information through statute of the Health and Social Care Act 2015, across the LEED system, in 100% of GP surgeries in adult social care in the community health organization and the mental health organization, we've got an integrated care record system whereby Bob's record is viewable across all those areas and fundamentally, we are sharing information for direct care purposes for Bob's care. That has, and through feedback across that system, across all those professionals, that has significantly increased the effectiveness and efficiency of professionals working around Bob and Bob's care and in particular, made decisions made around Bob's health and care, significantly improved decisions around Bob's health and care because professionals are not blind to what's going on with Bob, even if it's basic information, such as medications and things like that. Those sort of things can be transformational for Bob himself in that professionals are making a more joined up decisions. Now our approach and methods for doing that, we've captured that in a set of open source type documents and capabilities actually, which is not just IT stuff, so we have got things like requirements for integrated care records and the like, which you can download from our Ripple program website and some of the things we've got on there, which people can download and apply in other places, is we have got guides for information sharing and we've got some template agreements in terms of information sharing agreements for direct care and for secondary care around our integrated care record work. What we've also done in Leeds and we think that regardless of law and regardless of statute, I think, and this is not just my opinion, but it's certainly something I'm pushing hard in Leeds and the Leeds system agree with, we believe it's really important that whatever you do, regardless of law and what you can and can't do, I think a big lesson for us is to have that conversation with patients. So part of our joined up Leeds initiative is that we have had multiple conversations with patients and clients. As patients turn up at GP surgeries, there's been occasion where we've had conversations with people to explain to them how we are using their data and what we're doing with it, the purposes by which we do it and the like. And that in particular, the feedback from that has been quite significant in that in terms of our uses of data for direct care and also secondary usage is to prioritize health and care services, 98.5% of all our patients and clients basically said that they would consent to that usage. So if you have the conversation with people in the context of their care, we generally find that it doesn't become a problem. So I'm a real advocate of doing that. So that's just a quick overview of what we've been doing in Leeds and hopefully some basis in terms of my understanding of where we are nationally in terms of information sharing. So I'll leave it there and hope to get into some decent conversations later on. Dylan, thank you very much for that. We've already had quite a few questions through Dylan and I have assigned them to you. So you might like to answer them for free to answer them generally or specifically to those that have asked them. If you go down the list, you'll see the chat one. Right, let's move straight on. Thank you for that. We've now got Jocelyn Palmer, the Program Manager for Connecting Care, Bristol, North Somerset and South Gloucestershire. Jocelyn, are you there? I am there, hi. Wonderful. The screen is yours to control. Fabulous, okay, thank you. So I'm probably gonna be picking up on a couple of things that Dylan's talked about but I think what I will be talking to essentially is working with multiple health and care partners and also the link to information governance and whether or not it's a barrier to some of the more integrated ways of providing care. So just a little bit about us. So Connecting Care is a program which is essentially a digital program across our region and it's all focused on how we can better share information between health and social care organizations and indeed other kinds of organizations such as potential voluntary sector and so on. And the whole ethos behind it is really how can we make care better, safer and more joined up? So you can see there are a couple of quotes from people who are essentially reporting back on the benefits of Connecting Care program and most of the work that we've done today has been on shared care records. So very similar to the work that they've been doing in Leeds and you can see it whether it's talking about time saving or better safeguarding practices or safer care or actually making decisions about care. It's pretty obvious that clinicians and practitioners having information that they need really does support better, safer patient care. So who are we? So we are a mix of all different kinds of organizations. So locally, three acute trusts, two of which are pretty big hospitals based within the city. We've got three different community health organizations, three local authorities, mental health trusts out of ours providers, GP practice, ambulance service, et cetera. And the Connecting Care program is essentially bringing all of those different organizations together to say, how can we best serve our population? So as I'm sure probably many of you would recognize when you're working across partners and partnership organizations like this, then there are some quite unique challenges that maybe you don't have so much when you're just working within one organization. And I guess we could characterize this by almost calling it the herding cats challenge. And I think that within the program, there are definitely political, personal, human, organizational, and behaviors and dimensions. So whilst I think that the big picture is of NHS and a care system that's definitely under massive pressure and the organizations are coming together and certainly in some places in the country, there's some really innovative. Have we lost you, Jocelyn? And things like political dimensions between organizations. I'm still here. Can you not hear me? Just occasionally checking out. Hi. Yeah, I can hear you now. Carry on. Hello. Hear you. Yeah, I think maybe there. Yeah, okay. So when looking to deliver a program, which is about whether it's a digital shared care record or other digital solutions around information sharing, then recognizing and working with these human dimensions are just as important as working within the legal boundaries and actually the kind of formal governance elements. And I think that both of those sides needs to be tackled if you're to make progress and to be successful. So in terms of the information governance aspects, then I think certainly when we started, there was a perception with some of the partner organizations or just generally within the teams we were working with that information governance was a blocker and that everything around information governance was about not being allowed to share information. I think that time has moved on since then and I think it's definitely the case that as Dylan referred to, that there are legal powers and statute which support information sharing. So it's definitely not a blocker, but that's not to say that it doesn't require work. So I think part of our challenge, if you like, is to accept that challenge and to say that yes, we do need to do the work. We need to have the conversations with clinicians, with practitioners, with members of the public, and the fact that you are doing the work doesn't mean it's a blocker. It's just a job and a task and effort that everybody really needs to put in. I think a couple of things that we feel are really important and has been born out to our experience here in the Bristol area is having the right people collaborating and working with the differing views across the partnership is really valuable and really helpful. So for instance, we had some quite innovative and different ways of thinking that came from some colleagues in local authorities. And actually some of the challenging at times, conversations between health and social care colleagues about what was permissible, what the legal powers were, what we were allowed to do, what we weren't allowed to do were valuable. And actually in having those conversations, I think that we got to a better place and to a stronger partnership. So I think linked to that, there's definitely an ongoing need for education so that people understand what we are allowed to do. And clearly some of that is national guidance and so on, but it's also about making sure that people within a project team or a program team or a partnership are all aware and mindful of actually what it is that we're able to do. And I think also to pick up an echo on Dylan's point about the transparency. So really working the whole time to be as trans... We lost you again, Jocelyn. ...and as open as... So some of the key things for us. And I think other areas that have definitely benefited from some external support and input. So we have at times asked information commissioner to come to support, to review work that we were planning on doing. And we've also asked for external quality assurance and advice. So I think really being open in many ways and accepting the challenge and recognizing that whilst it may be at times hard work or feel like hard work, the ultimate is about making care better for all the people that live in our city and our region. So I think those are the key things that I wanted to share about working in partnership and information governance across the partnership. I think that's all for me. Thank you. Thank you, Jocelyn. Apologies, we had a little bit of a glitch occasionally on the line there, but I think we got the gist of it. And I do think there is a really important point here about the role of the information commissioner's office. And sometimes the ICO is seen as the reason we can't do certain things. And I think you have made it very clear that that is not the case. And I think the support of the ICO's office for appropriate information sharing and responsible information management is extremely helpful in this. So without more to do, let's move on to our next panelist now, Dr. Amir Hanan. I'm not gonna go back through all of your background. It's on the screen there for everyone. So Amir, over to you. Well, thank you very much for inviting me to come and speak. And although this seminar is about data ownership and consent, I called it hash knowledge, saves lives, and hash and pollution and the difference between data and knowledge. I would like to thank all the patients, past and present, care staff, management and partners at Houghton County Medical Centers, Margaret, Ibon and Ingrid patients of ours, Wendy Povey, Deborah Smith, who are our management team, Glenn Griffiths, Dr. Richard Fitton, Dr. Brian Fisher, Louise Brady, who's a practice nurse in a local practice, Annalisa Drake, who's a practice manager in Cumbria. Sir Graham Cato, who was the chairman of the General Medical Council and the General Medical Council itself. The Information Commission's office, the GPC of the British Medical Association, the Medical Protection Society and Medical Defense Union, UNESCO, and of course the World Health Innovation Summit. And many, many other people have been on this journey that we've had that I'm going to share with you. But I thought we'd start first about data because everyone's talking about data and sharing data. I'm not sure if people have actually seen what a GP record looks like. So I thought I'd start with the GP record. It's often seen as the richest source of data that exists in the NHS. And clearly for those of us watching who aren't in the UK, in the NHS, if you have any care delivered to you, anywhere either in the hospital or in community services, every patient is registered with a GP practice. And the details of that encounter are sent back to the GP practice unless the patient asks for that not to happen. So often the GP record is a cradle to grave record and it contains pretty well every encounter you have. Here is an example. It's our test patient record for you to see what I get to see as a GP. This is EMIS-Web, which is one of the clinical systems that exist. And you can see their coded data at the top in the next procedure. You can see that our test patient has had a whole load of immunizations done. And below that you can see I've had a consultation with the test patient. It's telephone consultation. You can see their problem titled familial hypercholesterolemia. And that's coded data. And that will be SNOMED CT coded. And then below that in free text, I've got text there saying that about lumps and bumps around the knuckles and achilles and so on. That's free text. That's not coded. But below that it says FHCOL on ischemic heart, DIS, clearly that's coded data. And then below that there's a conversation that's taken place. And there's a summary of the information that was shared again in free text. And you can see there that if all you could see was the coded data, it would be pretty meaningless. But actually by seeing the wealth of information, the concerns that the family has or that individual has about familial hypercholesterolemia and what that might mean today or tomorrow is hidden away in a few words within the free text, within the consultation itself. And then below that there's a consultation about asthma which is a more routine type of consultation and some data in there again coded and non-coded. On the right, you can see a little box that flashes up that tells me about things that I need to be aware of and that's the system throwing up information that I might not be aware of, things that I need to do. And that's based on the data that's already embedded in it. And on the left hand side, you can see a list of problems that this patient has. So it's useful for us to be aware of what kind of data we're talking about and what GP record might look like. But if I now move on and start thinking about healthcare and the context of healthcare, I love this little picture that I found. I'm sorry, I don't know where who to credit for this picture but I think it's a wonderful picture because what it describes is sick care. And on the left, you can just see what I've described which is what traditional healthcare systems are more interested in. And it's your medicines cabinet, it's your drugs, it's your treatments, it's what we can do for you. And on the right hand side, you can see a fridge full of fruit and vegetables and things and that's healthcare. There's something about are we a national sick care service, a disease service, are we a healthcare service? And the reason why this is important is because if we now look at this little picture, it shows that when you start thinking about what makes us healthy, in fact, there's only about 10% of what we do that healthcare can impact on. 20% is our genetics so let's blame our parents for that. 20% is the environment and more than 50% are those healthy behaviors that we have. And yet when we think about where we are actually spending our money, over 88% of it is being spent on medical services, a little bit on healthcare behaviors and what not. And there's a real contrast there between the sickness service and the health service and how can we link the two together? And that's why, oh, I can't forward the slide. That's why I say that the business end of what happens where a lot of the really important decision-making takes place is right inside the consulting room and here's a picture of me with Yvonne in my consulting room. And there you can see two experts. Yes, the patient Yvonne comes to me because she is expecting the best that medicine can offer and healthcare can offer and I'm trained in terms of how to take her history, how to examine the patient, how to come up with a differential diagnosis. I've got the golden pen so I can refer the patient for further investigations, start medications and things and refer her on. But the patient is an expert because she's an expert in terms of what's been happening to her up till now, where she's been, what sorts of things she's found out for herself, what sorts of healthy things she's tried or unhealthy things she's tried, and also how it's affected her family. And she's trusting me to do the best that I can offer and I'm trusting her to tell me as much as she can. And there's a conversation that happens and we forget that this is the business end, this is the unit of healthcare if you like. But of course, I don't know her from Adam or Eve but I've got that computer system in front of me that I was showing you earlier. And when I put her name into the computer up comes her medical record with all the previous consultations, what's wrong with her medications, allergies, previous tests, investigations, other places that she's been to, other services that she's had whether it's the hospital or it's community services, perhaps even social services have contacted me about issues that they've got. And that's coming into me and I can see all that information on the computer. Not only that, but if I then wonder what can I do for her, I can go to resources such as clinical knowledge summaries and in the past it used to be the map of medicine that I could look at that would provide me with information on what I can do next. And if I decided or if we decided together that we're gonna refer it to the hospital, I'd use something like e-referrals to see what providers there are. And that's the computer telling me about what appointments there are and where I can refer her to. Now this is the important thing. If I can turn that screen around that I'm using at the moment and allow the patient to see the same information as what I can see, then we move into something very, very exciting and I call this a partnership of trust. It's where the two experts in the room, the clinician and the patient and for that matter the carer if there is a carer as well. If we can share the same information between us, then very, very exciting things happen. The average diabetic patient only gets to spend about three hours a year with a healthcare professional of some sort. So the other 5,797 hours in a year, they're on their own, put them alone often. And we need to start thinking about how we can support that patient and that family to be able to manage when they're away from the doctor, the nurse, the social worker or whatever. How do we do that? And of course in our practice, we've been enabling patients to access their records for over 12 years now. But the way that we've enabled them to be able to do things for themselves rather than having to keep coming back to me again is through the practice-based web portal, hdmc.co.uk, I encourage you to have a look at that and look at the kinds of information that we're providing. Yes, we've got data sharing agreements. Yes, we've got summary care record. Yes, we've got the fact that if you turn up in A&E at the local Tameside Hospital that they'll be able to access summary information. But the reality is a lot of my patients don't just go to Tameside Hospital, they go to the other hospitals around Manchester. And I've got patients around the world who are out and about working and all the rest of it. What happens to them? How are they able to access the same services? Because they can't leave their diabetes behind in Hyde. They can't leave their heart disease or depression or whatever it is. And we've got to start thinking about how we support care for people where they are and increasing that further field. Which is why I think we've got a fantastic opportunity and I call this the paradigm shift in healthcare. And I think we should get behind Jeremy Hunt and support him. This is a tweet that he put out at the beginning of this year on the 1st of January and you can see a link there that you can see for yourself. But he said, 2016 is the year everyone in England will have access to their whole medical record online. But he's also noted in the video, he's noted that the internet has transformed our lives but not done as much as it could in healthcare. And there's a challenge between where we are and clearly what we're doing inside our practice and how can we spread this, not just around England and the UK but in fact around the world. So I think there's a few issues. The first and foremost is I think we need to start thinking about how we can enable patients, every single person on the planet, but definitely in the NHS, every single person to be able to access their medical records. It's interesting that when I was listening to the other two speakers that they talked about all the different organizations but not very much about the people or within those organizations who are using those organizations or relying on them and thinking about how we can share the information with them so that they can take it forwards. So I think there's a really important issue around how we can enable patients to access but not just access, understand those records. I've spent a huge amount of time over the last 12 years helping people to understand what they mean. Anyone can provide a link to a webpage that can allow you to see what your doctor's written but helping them to understand it is something that I really want doctors, nurses, allied health professionals, social workers, volunteer sector organizations and everybody listening on this call to start thinking about how you can help deliver value by supporting people to understand what they're doing. And part of that is around this explicit consent process where patients actually understand what it is they're signing up for before they sign up for it. If I'm being asked, is it okay for me to look at your record? Well, how can I answer that question if I've not seen it myself? And I think that's something for us to think about is if we're building systems that allow the sharing of data, we need to ask the question that if we are gonna ask the patient for consent, how have we enabled them to be in a position to be able to give real consent from an informed position because we know that, for instance, GP records have up to 30% of errors in them. Well, if the sharing information is an error in there and the patient doesn't even know that but they're consented to it, that's not gonna work and that's gonna cause major problems for the system. So we need to start thinking about how we enable people to be in a position to be able to give informed consent. 6,450, in fact it's more than that. We've had another 33 patients this week signed up who've signed up to be able to view their records. But what was interesting was when care data came along, we asked our patient population because the Information Commissioner's office said it was our duty as the data controllers to actually inform our patients about care data. And when we did inform our patients, 11% of them had opted out by May 2014. But for me, what was really interesting was when you looked at the ones who'd opted out, 58% of them had access to their own records and could share it with whom they liked. That was the really interesting thing that the people that were opting out were the very people who were in a position to be able to share the information with whoever they wanted, whether it was for direct care or whether it was for secondary users. And in fact, many of our patients are very happy to want to share information but they're saying, please ask us, we know what's in our records, we can see our records, we understand them, and therefore we are in a position to be able to choose whether they want to share the information or not. So they don't want to stop the sharing, but they're saying, please enable us to do it and get us involved. And then when we start thinking about, well, where's the funding being spent? We can see that over eight million pounds are spent on care data to date and much, much more is being spent on local data sharing agreements. I've talked about the fact that Utenac and A&E, the A&E doctors can access summary information. Well, there's been a cost attached to that that the taxpayers spend and that's very much more than the eight million pounds when we start to add to how much we spent around the country. But do you know what, the really interesting thing is that not a single penny has been spent on enabling patients to access their records and understanding. And I think we need to start to ask questions around where we are spending our money and why is it that A&E departments are maxed out and for, and patients and families and communities are asking, how can we help the NHS? Well, there's something about how can we support them to be able to manage their care in the way that patients have been able to do this? And to do that, I think that we do need to support GP practices because we are under huge pressures but we also need to support the community. And the moment we start to do that, we will then start to move towards the next generation healthcare. And so my final point is, well, what's all this impulsion about? Well, if we sit around and wait for things to happen through Brownian motion, and that's gonna be evolution, that's evolving, that'll take many, many years, decades, and most people think they'll give up the ghost before that happens. There are some people that say, well, maybe it's a revolution that's needed, that we just need to smash the systems and start again. But that's very, very scary and I wouldn't recommend that. I think there's something in between called MPOW pollution, which is about empowering our patients, empowering our staff, and building organizations that want to empower the people around us. And we start to share the data and the information so that they have a better understanding of what's going on. And that's records access and understanding. Thank you very much. Amir, thank you very much for that. We've had quite a few questions come in, particularly about the vexed issue about having access to a whole health record, when it will happen, is it safe? I've sent you some questions, Amir, to answer online on that if you'd like to have a look. But it is definitely a hot topic at the moment and the screens have lit up. So thank you very much for that informative piece. Let's move on to our last panelist now, Stacey. Stacey Egerton is the lead policy officer for Public Services at the ICO. Over to you. Hi, thank you very much. So just to briefly finish off with that, I'm just going to cover a few high-level points, really, from our perspective. And I suppose just a little brief introduction about the kind of work that we do. So I work on the Strategic Liaison Department at the moment. And we're sort of very keen to sort of provide that education and knowledge to organizations. So sort of promoting our advice and guidance, really. And I think the one key thing that I'd want to get across is we're very much here to help organizations. So, I mean, I suppose from my point of view, I would not want us to come across as the sort of big bad regulator that people are afraid of and that if people are sort of having difficulties and struggling, then we are more than happy to sort of offer assistance and help out there. So just moving on then to a bit, I suppose, about our experience with data sharing and sort of health and social care integration. I think it's pretty fair to say, really, that data sharing is essential for health and social care integration. And from our perspective as the regulator, we just want to ensure that information is shared appropriately with no privacy or information rights implications. And also, I think that organizations are aware of their obligations when sharing data. I think it's a common misconception that the Data Protection Act creates the barrier to data sharing. And I think also Jocelyn mentioned as well that IG in general can be seen as a blocker to data sharing and that it's stopping them from doing it. And a common example that we see at the ICO is that the Data Protection Act always requires you to have consent to share information. And that's not always the case. So consent is at one condition for processing, but there are others. And so for Data Protection Act, you don't always need to ask for that consent. But one thing that we would promote is that you always tell individuals what you're doing and that's the sort of fair processing and transparency. So the Data Protection Act shouldn't be a barrier to data sharing that is proportionate, necessary and justified. And that's a really kind of key point for us to get across, I think. So if it's not the Data Protection Act that's causing the barriers, then what is it that is actually creating those issues and blockers? And from the work that we've done across integrated data, we see culture quite a lot as being one of the barriers that get in the way. And particularly a risk averse culture, there's a lot of fear I think of fines from the Information Commissioners Office. And also I think fear of getting it wrong and people losing their jobs. And I think this is, the fear of the ICO fines in this particular case where an organization may have had a security breach previously or received an ICO fine previously. And that often comes across, then, I think, in future practices. I think also there is still a lack of senior buy-in and support. I think we come across a lot of IG professionals that perhaps feel that they're fighting the Information Governance Battle, I suppose, on their own. And IG and the responsibility for Information Governance, I think, needs to be pushed up to board level. And that's something that the National Data Guardian also has expressed quite strongly. And then, finally, there's also a lack of knowledge and understanding. And this isn't necessarily within the Information Governance teams, because obviously there's a lot of really great experience out there. But it's particularly across other areas. So important areas such as project management and IT, maybe. So the legal framework for sharing data within health and social care can obviously be quite complex. But other teams need to be aware of Information Governance, especially knowing who they can go to or where they can go to for help and assistance. Staff training's also really, really important, I think, in that area. So obviously sort of pushing that knowledge and understanding into the organisation. And if you've not got the senior bite in, then obviously Information Governance is not going to be a priority. So it's all kind of interlinked, I think, those barriers, and it can be a struggle. And then finally, just onto my last slide, I just thought it'd be useful just to cover some kind of high level important steps to consider all good practice points, really, from our point of view. So I mean, in terms of data sharing in general, it's obviously really important that organisations know what they're sharing, who it's with, and for what purposes. And I think also establishing what role everybody plays within that. So sort of data controller, data processor role. So in some of the work that we've done with integrated care systems, these kind of roles can get quite complex. And often you'll have an organisation that may be playing the role of data controller and data processor at the same time. And it's just about making sure that you've got those, the understandings there, and that you've got those data processor contracts in place. And also knowing how you comply with the Data Protection Act and also the common law. Or then moving on to privacy impact assessments. Privacy impact assessments are something that's really important for us and something that we've been trying to promote for quite a while. We often see them considered as an afterthought when obviously privacy should be considered right at the beginning of a project. So I think we need to move to a position where everyone is thinking right at the beginning of a project, do we need to do a privacy impact assessment? And let's do one, rather than has one been done, which is quite often what we say. And privacy impact assessments, they're going to help you map out your data flows and identify and mitigate any risks. And I think one last point to make on PIA is that they're not the sole responsibility of the information governance team. I think a lot of the time it's just their responsibility. And again, going back to that point I made, it needs to kind of be pushed up the agenda so everybody's considering do we need to do a PIA. So that's everybody within that's involved in the project and making sure I think that everyone is consulted as well because people are going to have different ideas of risks that they can bring to the table. And then finally, transparency. And for us, there's been a really important one. Public trust I think is more important than ever at the moment, especially with increasing public concern over how their information is being used and who it's being shared with and for what purpose. I think people are becoming more and more interested in this kind of information. And the communication that you have with your patients is vital for them to be able to make these informed decisions about the use of their data. And this is especially the case if you're using opt-outs. It's really important that they can make that informed decision when deciding whether to opt-out or not. And then a final point to make there is the fact that this transparency is only going to be strengthened with the implementation of the GDPR. And that's it for me really. Hopefully that should prompt some interest in discussion points. You know, general point that information is everybody's business. It's not just the responsibility of a GP, of a health organization, of an IT professional who's looking after the systems. There is a joint responsibility and therein lies I think some of the challenge in knowing therefore who is accountable, who's taking risks, and how do we questions in. And I would like to pick a few out now if I may. So you will see on the screen in front of you that question box again. Please enter those questions. I can see them all on the screen. We have a lot that have come through already. I want to ask one which Andrew Harvey's raised. In health and social care, there is a network of, networks and support for strategic information government across, a governance across the V's hang. Network and support infrastructure of health and social care information sharing. I would go further than that and say how much are not just patients and public but even health informatics managers, never mind clinicians, of the requirements of the Data Protection Act. And how it leads to come along and ask, can people sort of explain what the data protection principles are? And I think if people understood them and it may became more meaningful, then it would be much, much. If I just give a couple of examples of what I mean by that. One of the principles says, personal data shall be processed fairly and lawfully. Well, how are you as a patient, as a data subject, as an individual, going to know whether your data is being processed fairly and lawfully unless you can actually see the information about you? And I can go through all the other data principles and as you go through them all, you begin to realize that actually in order for us to fulfill the Data Protection Act, we should all be spending all our time and energy to enable those data subjects to be able to see the information because it then becomes safer for us to then be able to handle it. Dylan, anything you'd add to that? Yeah, I mean, I guess in terms of support networks, I think central health colleagues spin some of these support networks up by initiative, by initiative. So there are networks such as the Health and Care Integration, that shared information, so if you were to go online and just type in Health and Care Integration pioneers or bank guards and informatics, there are websites and news items and areas where you can collaborate in. They have meetings, there's a meeting in Nottingham, I understand it may, for instance, where colleagues from NHS England, the IG Alliance, which is a combination of people across the health and care system working on IG, matters they turn up to those events and they generally have presentations, you can have discussions and all of that. Other networks that go on across local places, so local government and health, there are a set of, for the more technically minded people who are into the gubbins of IG and cyber security and all that, there are networks in every region of the country called the WAPS, W-A-R-P. There are other professional organisations, so for instance, there's the Society of IT Managers, Socket Info across local government and health, and they are linked into other networks which are the Clinical CIO Network, CCIO Network, chaired by Dr. Joe McDowell from the North East and there's also a CIO Network for health professionals as well. So if you search for them online, you can think that I would, anything that is done, which is good practice, I think some of the stuff Amir was saying, it's really valuable, if you've got things to share, there are the channels through there where they can be shared more widely, that's the place to do your, where you can grab things to reuse or find links to other things. So quite a lot of networks and stuff in place right now. Thank you, Dylan. Can I ask that? Please, Joe, Amir. Oh, thanks. Thanks, Dylan. When we first started 12 years ago, it became very obvious that we needed to engage with our patient population and that was one of the prime reasons why we set up our patient participation group, which is incredibly powerful because not everyone can go down to nothing and whatever it might be. They control the monies, they control the staff, they control the deployment. If a board decides that it wants its patients and the people it serves to access their records, they will then put the right investment in and direct their staff in order to do that. If it wasn't just an information governance issue, it would be a care issue. Okay, thank you. Really good point. I'm gonna move on because we do have a lot of questions here. I'm trying to pick out some complementary and contrasting questions. One from Tracy Downs, but also we've had from other people saying, well, look, you know, frankly not everyone has access to the internet. What should we do about, you know, that group of people who do not necessarily want to move to all this electronic digital access for everything and own their records electronically? What do we need to do about that? Dullin, can I ask you initially, and then I'd like to ask Jocelyn as well on this, based on what you're doing for Connecting Health in Bristol. So quick response, Dullin, if I may, and then Jocelyn. Yeah, sure. I mean, I think this thing is another presentation itself, but the quick response is that digital inclusion and digital literacy is critical and key. So within the leads context, and we are very pushing, very hard nationally, getting, enrolling patients and clients to basically be able to use the internet and get online and find information, et cetera, around their health and care conditions or whatever is a significant priority for us in leads. And we have discovered in the work we have done, we have rolled out things like IoT production, monitors, IoT devices, all sorts of things which measure people's health in their homes, but we've generally found by getting them on the internet and connected to other people and accessing information, even if it's general information, has that in itself has had very positive results. So I think really important that all professionals and all clients and people out there, we have a big focus in terms of getting them digitally literate. And I guess the other thing, part of that has to be to give them a greater understanding about what people are doing with their information and how to manage and handle their information. Thank you for that, Dylan. Jocelyn, what about your experience from the Connecting Care program? Hi, yeah. So I think probably one of the things I would add here is that I've noticed that it's quite easy for people to make assumptions that the only digitally literate people will be younger generations and so on. And actually, we've just started to do some work with Southampton Hospital, who have done some amazing things with their patient sort of facing record, where, for example, in terms of prostate cancer, the care that they can provide, much of which is being done digitally through people accessing their phones and their record and being able to communicate with their circle of care and their doctors and nurses and so on. And that's been of all ages. So I definitely agree that we will need to look at digital education, but I also think one of the things that we need to be mindful of is not to make assumptions that just because somebody is X-years old or whatever, that they won't want to do this, because definitely the learning that we've got from colleagues in Southampton is that that's not the case. Okay, I'd like to move on to another area now. This image is... Oh, sorry. Who's that? Is that Amir? Oh, Josh, can I just answer that? Yeah. Yeah, yeah. The Office of National Statistics in January this year said that 89% of the population in the UK had gone online at least once in the last three months. Yeah. And that was in January this year. The second point is when I come across this, yes, clearly it's not for everybody, and particularly if you're severely demented or severe mental health problems, then you're hardly gonna be able to go online and be able to do that. But often what I found is that often people have families or people whom they trust who are very happy to do so. And my third point and what I share with people, so I might speak to an 80-year-old or for that matter a 50-year-old who goes, oh, I'm not interested in the internet. And I say, well, you could write a letter, you could go to the post office and get a stamp, post it, and maybe in about a week's time it might get there and then we'll send a letter back to you or you might choose to send a text message or now it's WhatsApp. And as soon as I say that and it takes me 10 seconds, it's amazing how people start to smile and start to see the art of the possible. I see a lot of patients who put their mobile phone on the desk and they don't have an email address or anything. I'll go, oh, you've got a smartphone. Do you Skype? Do you use Facebook? And often they'll have like an Apple phone or a Google, an Android phone. And I'll go, oh, you have got an email address and then they'll go, yes, I do. But actually what the issue is is people are fearful of saying I don't actually know how to use it. So I will spend a lot of time getting people to go on the Google Play Store or the App Store to actually download the app because they just didn't know how to do that and then help them with their passwords to be able to use it. And that wow factor of being able to use the phone, the point is the technology is already out there. We've got to change the culture of the NHS and start to have a can-do attitude. Okay, thank you for that. And I do agree with that. I do think there's another factor though here which is that online systems have got to be relevant, they've got to be intuitive and they've got to provide real and easy value to people of all ages and all positions, irrespective of whether there is a physical or mental reason why it might be difficult to access. And I had a question through, I'm not quite sure where it was but I had a question through from someone and I made the point that if you don't have broadband access in your area or if systems really are not very easy to use, then you're going to bother, I know my 86-year-old mum does a lot of stuff online for her health because it's easy but she only does it with the stuff that's easy and frankly it's often not the things from government, it's things from boots to chemists which is relatively straightforward for her to use. So I do think there's a responsibility on us in how we design and develop some of these systems in partnership with the public that are going to use them of all ages. Anyway, I want to move on because I'd like to go back to a point earlier on, we've had quite a few questions, including one from Andrew Harvey about the Data Protection Act and so this one is for Stacey, please. The general gist of the question is we've got the Data Protection Act but why don't we upgrade the Data Protection Act to embrace things like privacy impact assessments and indeed GDPR? So I wonder what's your view about the general data protection regulation, updating the Data Protection Act and bringing in things like privacy impact assessments into these statutory obligations for the public and private sectors. Stacey. Yeah, I wondered where that question was going but I'm glad obviously you made reference to the GDPR. Yeah, I mean the GDPR is obviously a sort of quite a big piece of legislation and we're obviously in the stages of going through it in some detail. There are things in there that are still the same and there are things in there that are slightly different and that are going to require organizations to do things differently and obviously we've been promoting privacy impact assessments now for quite a while as part of good practice but they obviously haven't been mandatory and the fact that now the GDPR makes reference to privacy impact assessments, I think we could only see it as a positive given the fact that we have already been sort of suggesting these anyway and as I sort of strongly made reference to in my sort of introductory points, privacy is so important to consider right at the beginning of a project and I think now that the GDPR has kind of put this on a legislative standing, I think it will kind of force the hand almost and it will help to push that up the agenda and make organizations a bit more privacy minded I think and the fact that they do now need to start really thinking about this so yeah, I think we see it as definitely a positive Thank you for that I'd like to move on now to a slightly different area that's cropped up, we had a councillor David Hopkins, a councillor asking a question about the challenges facing local governments in particular so he's making the point that as a local councillor he's faced yet again with huge financial challenges in the forthcoming budget round and he wants to know how is data sharing between their social care and the partner in NHS bodies actually going to improve outcomes but also improve efficiencies to be blunt saving financial resources for all concerned so the philanthropic bit about doing better things for clients, for patients we're all agreed about, we need to know how to do it but he's making a very good point that actually at the end of the day there's not enough money, we have to find cuts how can we make this into a business case who would like to go first on my panel for this one? Do you want me to go first? No, go on Go on, go on Dolan is just coming in now so yeah, I mean from my perspective there are significant business cases to be drawn up from information sharing I think in terms of the evidence within Leeds itself just from basically someone coming to a cancer clinic for instance in Leeds teaching hospital and having a situation where the consultant actually has got the correct doctor's address GP address as opposed to what was in the originating system because they've got access to Leeds care record things like that means that you're providing more efficient and effective care so the time it takes for people from a direct care point of view to deal with some of those things are significant further the ability for public health organisations for instance which are in local authorities for instance one of the things health the NHS are really good at is co-define everything they do so the ability for people to collect that co-define data to ultimately understand where particular conditions or issues are more prevalent and as a result of that prioritise scarce funding in terms of maybe campaigns around prevention or whatever to particular areas and things like that there are significant I think efficiencies that can be done and in particular I would suggest as well that in terms of flipping the thinking from a prevention point of view the opportunity to connect patients with support groups and things like that through information sharing is also significant in that it should help to divert the tide of people coming into the system and helping people to live better lives basically so there are significant and multiple business cases for both direct uses and secondary uses Thank you Dylan, Amir I think you wanted to come in there Yes I just wanted to say that the costs in the system start to happen when people start pinging around so if a patient can't get into the GP surgery and then turns up at the walking centre or rings up 111 and then goes to a walking centre and then goes to A&E and then comes back to the walking centre that's where the costs and of course if they ask for an ambulance as well at the same time then it's just putting more injury to insults or whatever it is my focus has always been on do the right thing there if you can with the patient directly give them the information, help them so that when they walk out of the room they've got a bit more of an idea of what they can do for themselves supported by us now the minute we start thinking along those lines and start thinking about patients as not being people with needs but rather patients being assets and the community being an asset and people who can actually help themselves then we move into a very very exciting space and that's where I became the chairman of the World Health Innovation Summit which is all about inspiring communities because every health and social care organisation on the planet is struggling as costs continue to rise and we continue to talk about digital technologies which are MRI scans or whatever it is but actually the real innovation is thinking about what people what families, what communities can do and if we can just even 5% nurture people to be able to do more for themselves there's a huge return on investment for us even for those data sharing things that we're talking about people will want to share the information because they know what's being shared about them if we don't do that you lose trust and that's what happened to care data Good point would Jocelyn and Stacey do you want to come in on that one? Hi yes, I guess it's Jocelyn here so I would say that just to the point about local authorities and some of the pressures on them and within social care I would say that through the shared information and digital shared care record work that we've done we've definitely got demonstrable evidence of the fact that cost savings can be made which would obviously kind of hugely important at this time so whether that's in terms of information sharing, supporting better triage not duplicating effort not duplicating interventions you know not providing certain kinds of care when other people are already doing it etc so we've definitely found that evidence and I think that the potential is there that information sharing can actually help to support the economic and financial pressures but I think probably there is a challenge within that in that oftentimes what it does need is teams of people and practitioners to actually work differently and sometimes that can almost be harder than the information sharing or the digital aspects of things yeah good point I'm going to move on then I had another question here many patients initially deny their illness and don't want to be reminded of support groups so consent for secondary sharing should be detailed and opt in opinion from Chris Frith I'm not sure if that's Frith or Firth so apologies I think it's Frith but Ania do you have a view on that one? yeah I completely agree that there should be explicit consent interestingly the trigger for me about why I went down this route was seeing a patient who came in with diabetes and me asking him what did they think about how their diabetes was and they said it was fine and I didn't really understand what fine meant because it wasn't something that I've been taught at medical school but this patient had terrible control of their diabetes it was off the scale they hadn't ordered any of their prescriptions for the last 10 months there hadn't been too many of their checks but of course they were fine because they weren't taking any medications they weren't getting any side effects and they felt wonderful about everything which is where I started to think about this person thinks they're fine but they don't actually know what risks they're taking as a result of that I've come across lots of patients when they're given a serious diagnosis like diabetes and they start thinking that they're going to lose their legs and their eyesight and they're going to have kidney transplants and what more they go into shock and often in that period of time of shock they just can't take anything in and that's a very critical time that I have as a GP to support them whilst they're trying to stabilize themselves it might not be a year or two and what I've found is patients have accessed their records now it's only sort of maybe two, three, four years down the line when they've got their head around what's going on and they're in a place to be able to start to think about what it means that they can go back and they can look at previous consultations that they've had with their doctor or nurse when they're ready for it I think that's a really important point that you don't suddenly just because you've got access it all sorts itself out but all the jewels lie in that record from the moment that you joined and when people start to look back at things they can learn from that learn from their experiences good and bad and then start to understand what that means for them now and into the future and it seems to me there is an issue here and this has just dropped up before it is very easy and simplistic to say patients need to be in control or citizens need to be in control of their care records they determine what they can view they should have access to everything and they can share whatever they want wherever they agree but you raise an important point it seems to me that there are times where it is not in the individual's interest to allow aspects of their record to be shared so there is a judgement that clinicians and practitioners need to make so seeing the result of a test before a practitioner has had a chance to talk to you about it may not be in their best interests what's your view on that there's two things it also may not be in the best interest of the patient when the GP is on a webinar and the results are on the computer system but the GP hasn't had time to look at it so it's a double-edged sword there and actually as patients start to begin to understand their records better and many of them know it as well as I do in terms of that particular condition because that's what happens over a period of time well why can't you look at your test results and why can't you determine what it might be about because there might be something serious there that could save your life so long as one you've got the consent so you understand what risks you're taking but you're looking at information that your doctor might not have had a chance to look at and two you've got some understanding of what to do about it I think and the other thing is that I never talk about patient control of the record it's nonsense I've never heard a single patient and I've got thousands of them accessing their records not one of them has ever said I want to control the record so that doesn't make any and the other reason doesn't make sense is because all is going to die one day well you know sitting there saying I want to control my record when I know I'm going to die it just doesn't make any sense so I don't talk about control I do talk about a feeling of control and that's different it's that feeling actually what people want to feel is that they're being cared for that person's listening to them we seem to have lost the art of listening yes we can do a consultation yes we can go into a waiting room and talk to a couple of patients and think therefore we've consulted with them but actually what we should be doing is listening that should be part and parcel of every single encounter that we have when we do that we're moving to very exciting spaces I think that's a great place to finish our panel discussion unfortunately we are out of time my apologies to some of you who questions haven't yet been been answered I want to thank all of you who joined this webinar because we had some really deployed and in-depth questions for our panelists I also want to thank our panelists for giving up their time to join what I think is an important debate we haven't solved all the world's problems here but I think we have gained a particular insight from some very different perspectives of the ways in which we need to tackle this problem both in terms of policy but also as Amir was just closing on philosophy, culture, behavior as well as the underlying technologies that can make it all possible so I want to thank you all very much for joining us today I hope you enjoyed that and I hope you will join us on future webinars thank you very much indeed