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An Information Revolution and Greater choice andcontrolwebchat: Follow up questions

1. Greater Choice and Control

1.1 The White Paper, Equity and excellence: Liberating the NHSenvisagesthat choice of treatment and choice of any willing provider will become thereality for patients in the vast majority of NHS-funded services by no laterthan 2013/14. It also makes a number of specific commitments aroundextending choice in certain services. We are currently asking for yourviews on the sorts of choices that you want to make, when you want tomake them and how we make this happen- as well as the challengeswhich you think may exist. The questions that were asked during thewebchat form part of this process.

Will it work?1.2 One of the questions asked was why we believe that our policy to extend

choice will work. There is plenty of evidence that most people want andvalue choice over the hospital they attend and the kind of treatment theyreceive. In addition, having greater choice and control may be particularlybeneficial for some people because it can help to build confidence and aidrecovery. Also, choice encourages healthcare providers to tailor theirservices to what people want and therefore should improve their qualityand efficiency. One question referred specifically to the Kings Fundresearch which questioned the link between choice and quality. However,

subsequent research has concluded differently and the Kings Fund studyitself did conclude that given its intrinsic value, the NHS should continueto offer patients a choice of hospital. Offering patients choice does notmean that they will all switch to non-local providers, nor was that ever ourexpectation. The important thing is that the patient has a say in where theygo. Finally, there is evidence to suggest that sometimes patients are notoffered the choices that they would like.

1.3 Another topic was how choice and shared decision-making will work inpractice. There are already legal requirements1 around ensuring that

choice of provider is offered and to ensure that people are able to make orshare in decisions relating to their care, but we know that this doesntalways happen. There are a number of other incentives and levers we canuse to ensure that choice and shared decision-making work. These arediscussed in the consultation document and we ask for your views. Werecognise that there will be challenges in making this work but theconsultation seeks views on the ideas we have and whether there isanything else that can be done.

Shared decision-making1.4 One of the questions asked if shared decision-making extended to service

design. The focus of shared decision-making is on the patient-clinician1 The Primary Care Trusts (Choice of Secondary Care Provider) Directions 2009

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relationship and decisions about their care, treatment and recovery.However, patients will also have the opportunity to be involved in thoseorganisations that make strategic decisions. NHS organisations arealready under a duty to involve users, directly or through representatives,in planning, delivering or when considering changes to services. This duty

will continue. In addition to this we are, for example, proposing that GPconsortia will have a duty of public and patient involvement and that onerole for the NHS Commissioning Board will be to promote and extendpublic and patient involvement.

Personal health plans1.5 On the topic of personal health plans, the white paperEquityand

Excellence: Liberating the NHSis supportive of an introduction of choiceas part of personalised care planning. As part of the choice and controlconsultation, we are looking at how to increase the number of people witha long-term condition who can benefit from this type of care planning, and

are asking for your opinions on how best to do this.

Choice and medicines1.6 A question was asked relating to the possibility of widespread patient

choice of more expensive drugs within the finite resources of the NHS.Giving patients more choice and control over their own healthcare will notnecessarily mean that they will choose more expensive treatment. There isemerging evidence that in fact the opposite is true - that where patientsare involved in their treatment options, they opt for less intervention andless costly options. We recognise that there are challenges aroundensuring that choices are both safe and sustainable and the consultationdocument seeks your practical suggestions on these issues.

Payment by Results and choice1.7 One question addressed Payment by Results (PbR)2 (the system where

hospitals are paid according to the activities they undertake). The WhitePaperEquity and Excellence: Liberating the NHScommits us toaccelerating the development and refinement of PbR currencies and tariffsacross the NHS to promote high quality, integrated and efficient care thatsupports patient choice. 2011-12 will see a number of changes, forexample, there will be more best practice tariffs and hospitals will not be

paid for emergency readmissions within 30 days of discharge. Our publicconsultation Liberating the NHS: Greater choice and controlenvisages apresumption of greater choice and control over care and treatment, choiceof any willing healthcare provider wherever relevant across the vastmajority of NHS-funded services by no later than 2013-14. The outcomesof this consultation may inform further changes to the tariff.

2http://www.dh.gov.uk/en/Managingyourorganisation/NHSFinancialReforms/index.htm

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2. An Information Revolution: key opportunities

2.1 We believe there are a number of opportunities in the informationrevolution to help achieve the Governments ambition of healthcareoutcomes that are among the best in the world. High quality health and

care services depend on good information. Good information alsoenables care professionals to make the process of care safer and moreefficient. Moreover, people should have the information they need to stayhealthy, to take decisions about their care and exercise more control of it,and to make the right choices for themselves and their families.

Information for all2.2 We received some questions which asked about ensuring information

reaches all people. These included questions about carers receiving moreinformation about the treatment and care of their loved ones and ensuringenough information about services for people with autism. One personmentioned that a recent survey showed that 70% of people when fittedwith hearing aids received no information about other services or assistedtechnology.

2.3 A key aim of the information revolution is for more information to beavailable for everyone about health and care services. We believe thereshould be more easily available information on treatments, conditions andlifestyle choices, so that people can be helped to look after their own andtheir familys health & care as effectively as possible. We want your viewson what information is required and your ideas on how this can be

achieved.

Transparency2.4 One person asked about the release of data from central government. We

want to move to an information culture of greater openness, transparencyand comparability. Our view is that there should be a presumption ofopenness across health and adult social care. Our intention is that NHSand adult social care organisations should deliver the fullest possiblepublic access to the information they hold as soon as possible, adopting apublish and improve rather than a polish and publish approach. Thiswould promote choice and shared decision-making. It would also enable

improved scrutiny and accountability at local and national levels.

Supporting those with long-term conditions2.5 One person raised the question of how the information revolution could

benefit those most in need of access to healthcare, such as people withchronic obstructive pulmonary disease. We believe there are a number ofways the information revolution could benefit those with long-termconditions. Examples of benefits could include:

People with long-term conditions, who would otherwise have to visithealth facilities frequently, may be able to get advice and supportremotely from their clinicians where appropriate.

A wider range of information intermediaries could help ensure moretailored information for people with certain conditions.

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Greater information on services and outcomes would mean that peoplewith these conditions would have more information to support them inmaking choices.

Access to information, tailoring information and sustainability

2.6 Information should benefit everyone. As we mention in the consultationdocument, we believe that achieving this objective is partly about tailoringinformation to the needs and preferences of different audiences but alsoabout offering support to enable people to make full use of the informationavailable.

2.7 Different people and groups in society access information differently. Manypatients and service users will continue to look to their health and adultsocial care professionals to provide information and advice, and some willprefer this to be face-to-face. Others will be very comfortable usingtechnology and would prefer to access information electronically.

2.8 One person raised the topic of voice recognition and asked whether it wastime to highlight and develop such technology. We want greaterinnovation and exploitation of information and information technology. Werecognise that a number of clinicians use voice recognition software toenter data and that such technologies can support accessibility forparticular groups of patients. We welcome ideas on how these and similarinnovations can be dispersed more widely.

2.9 We received a couple of questions on whether the Department will be

prepared to work with ground level innovators such as they service users,staff, third sector or with people with disabilities to develop online supportmaterial. We want to move towards a market place of organisationsproviding information so there can be more innovation and tailoring ofinformation for the needs of specific audiences. We want views on howthis can work.

2.10 Our plans to make NHS - derived data much more freely available willallow new information providers (intermediaries) to offer information ininnovative ways that makes it easy for people to understand. One personasked about the role of the Information Standard3. We are considering

how people can be assured of reliable good quality information and theInformation Standard is one model which we are considering drawing on.We are consulting on this matter and we will also work with interestedparties to explore how we can ensure public trust in what they produce byconsidering schemes such as voluntary accreditation or industry-ownedstandards of good practice.

2.11 A question was asked about how we can improve access to onlineinformation. There are a number of measures that can be taken toenhance the digital reach of services within communities, including the

3

The Information Standard is a quality scheme which helps people to identify reliable and trustworthysources of information on symptoms, diseases, healthy living, diagnostics and treatments, and disability

issues - see http://www.theinformationstandard.org

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better use of IT infrastructure that is already available in places such asschools, Citizens Advice Bureaux and Post Offices. NHS Choices4,together with voluntary sector organisations already use a range ofmethods to help people access health information, including use of digitalTV,touch screen kiosks, and mobile phones. Also, there are a number of

initiatives for tackling digital inclusion, including Race Online 2012a majorengagement programme run through the Office of the Digital Championand UK OnlineCentres among others.

2.12 But to truly realise the potential of an information revolution, we need toconsider how we can all collectively and individually use information andinformation technology better. We would encourage all organisationsinterested in health and care, whether public, private or voluntary sector togive us their suggestions for improvement and ideas of how to make ithappen so that the information revolution can benefit everyone.

2.13 On the question of how the information revolution can play a part inbeing the UKs greenest government ever, we believe there are a numberof opportunities for the information revolution to have a positive impact onsustainability and carbon reduction. For example, better use of digitaltechnologies could lead to less travel required for appointments andcorrespondingly fewer carbon emissions. Further information on this willbe set out in impact assessment to be published alongside thegovernment response to the consultation.

2.14 Impact assessments on the information revolution will consider thepotential consequences on many issues including legal, equality,economic, sustainability, small businesses, social, and rural issues. Thesewill be published to accompany the Governments response to thisconsultation. We need to understand the particular features causingcosts, benefits or other challenges that need to be considered in theseareas. We are grateful to you for your thoughts in helping to develop ourthinking on these issues further.

Research2.15 Thank you to the person who drew the work by Detmer et al on

informed patients to our attention. Wed very much like those who are

aware of research related to information revolution topics to send it to us.This will help us develop robust evidenced based plans to ensure theinformation revolutions success.

2.16 We also received a question on what sort of data will be used forresearch and what type of research. Our intention is to make moreinformation about services and their outcomes available for a number ofpurposes including research. The type of research could vary forexample, it could be population studies, clinical trials or research onmanagement and efficiency. In particular, electronic care records and thewealth of structured data within them, are potentially rich resources for

4 NHS Choices is the country's biggest health website and provides information to the public for

making choices about their health.

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applied research. For example, by making aggregated, anonymised dataavailable to universities and other authorised researchers.

2.17 We also intend to give patients more information on research studiesthat are relevant to them, and more scope to join in if they wish. As

mentioned in the document Liberating the NHS: Greater choice andcontrol we intend to make sure that people can access information aboutcurrent research studies, search for clinical trials that are relevant to them,and be told when opportunities arise for them to join in relevant andethically approved research. Making sure that people are aware ofopportunities to participate in relevant research studies should help toopen up these opportunities to different groups and communities. Itshould make it easier for them to find out about research that could affecttheir own health outcomes. We are consulting on how people should betold about relevant research and how their preferences should be recordedas part of our consultation on Greater choice and control.

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3. An Information Revolution: information for patients

3.1An Information Revolution is a key part of the Governments agenda ofputting patients first - giving people more information and control, andgreater choice about their care. We want to support patients and service

users to be active participants in their care through information. Somefurther information is set out below.

Patient control of records3.2 A question was raised about the ease of changing inaccuracies in

information collected from the patient once recorded. We envisagepeople having access to their various records, starting with those held bytheir GP, extending progressively to those held by all health and adultsocial care providers. People could discover any factual errors wherethese occur and notify the professionals responsible. We do not envisagethat patients would be able to change information added by their clinicianswithout their clinicians agreeing; as clinician are held legally responsiblefor the information they put on a patients record.

3.3 However, it is the hope that new ways would increasingly be found toengage patients through their health records. There are already examplessuch as Renal Patient View, that enable people to add certain things totheir records as partners in their care.

3.4 One question was asked about the ability of a number of differentprofessionals to make entries on the patient record. We are considering

how patient control of records will be implemented but we envisage givingpatients control of their records would mean that these records would stemfrom the clinical records held by different organisations rather than a singlerecord. This is in line with our proposed approach to connect and join upsystems.

3.5 We thank those of you who contacted us to say how or where patientaccess to records has already been achieved. One person specificallymentioned that one system has already benefitted thousands of patientswith research showing that patients used access with flair and imaginationand that it is well received and safe and that practices think that it saves

them time. The question was raised of how we can best disseminateexisting functionality and extend it. We appreciate that patient access torecords already occurs in a small but growing number of general practices,to the benefit of the patients and their GPs, particularly where long-termcondition management and self management is concerned. This is onereason why we propose that greater patient access to records starts withgeneral practice records.

3.6 There was one question about whether we would consider direct patientaccess to GP records rather than the Summary Care Record5 to delivergreater patient control of records. We are indeed considering direct

patient access to records. The Summary Care Record, where5 http://www.connectingforhealth.nhs.uk/systemsandservices/scr

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implemented, serves a rather different purpose, in that it providesindividuals and their authorised clinicians with access to a summary of theGeneral Practice record of a patients medicines, allergies and adversereactions. This is particularly beneficial to the patient and their cliniciansfor safety and speed of urgent care.

3.7 One question raised was whether patients with diagnosed mental healthissues will be allowed the same access to their medical records aspatients with physical conditions. On the matter of the extent to whichdifferent groups would be able to have control of records, such aspatients with diagnosed mental health issues, carers, or parents, weenvisage that the extent could vary according to their circumstances andthe nature of the record and its contents. Wed be grateful for thoughts onthe opportunities or challenges for the information revolution on thismatter.

Information prescriptions and patient decision-aids3.8As a routine part of their practice, care professionals play a valuable role in

providing patients and service users with information, including signpostingpatients and service users to reputable information sources such asinformation prescriptions and other resources such as patient decisionaids.

3.9 A question was asked about the role of information prescriptions in theinformation revolution. We want to ensure that the information patientsneed to enable them to take greater control over their health and care isavailable. We are consulting on the information patients find useful, andwhat support or other information would be helpful. Wed be grateful forviews on information prescriptions and other decision-aids.

Patient and staff generated information3.10 Under the information revolution, there would be greater emphasis on

information generated by patients such as Patient-Reported OutcomesMeasures (PROMs), patient feedback and patient experience information.Service user feedback, when used effectively, also provides a basis forpeople to enter into a dialogue with their care providers, involving themsquarely in decisions about their care and the way it is delivered. We also

plan to introduce greater transparency in the use of staff feedback. Wewant to work with staff, patients, service users, the public and interestedorganisations to identify the best forms of staff feedback to be used fornational comparisons.

3.11 One person raised a number of questions about patient and staffsurvey design and analysis. These are important issues which we willreflect on carefully as we consider implementation of the informationrevolution following analysis of the consultation responses.For example,we know the staff survey is well established in the NHS and regarded asthe key source of robust staff experience information because it is run to

exacting standards. To support its development we ensure key usersprovide input to decisions on changes to the survey using the NHS Staff

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Survey Improvement Board. This has been in place for a number of yearsand arrangements are likely to be retained.

Information about medicines3.12 There were a few questions raised on information about medicines.

One person wanted to know about getting good quality information topatients about medicines, and another asked about whether GPs would beresponsible for giving out independent information about medicines. Ourview is that as a valuable and trusted presence on every high street,community pharmacies and pharmacists are, quite literally, well placed toprovide good quality information to patients about their medicines and howto get the best from them. In addition, GPs and other relevant prescribersprovide reliable information on prescribing a medicine, taking intoconsideration the patients individual clinical circumstances.

3.13 In response to the question of what information would be available on

the drugs prescribed by each GP consortium: PCTs are currently advisedto communicate clearly with stakeholders (healthcare professionals,patients and the public) about the availability of treatments which have notor not yet been appraised by NICE. We would expect GP consortia tocontinue to be transparent about the availability of drugs and treatmentswithin their area.

National channels of information3.14 For those who raised questions about the role of NHS Choices and

NHS Direct websites in the information revolution, as we mention in theconsultation document, we believe there will be a need for a channelstrategy to provide a coherent view of the nationally-managed channelsneeded to support access to information. This will need to combine theadvantages of a single place to go for health issues of the kind offered byNHS Choices, with the benefits from opening up the analysis andpresentation of information to a wider range of information intermediaries.This will also need to take account of the work to put in place the new NHS111 service6, which is the new telephone number for access to urgent careservices, currently being piloted in County Durham & Darlington,Lincolnshire, Nottingham City and Luton.

3.15 Our thanks to the person who flagged their existing local channel ofinformation - a local web portal along with freephone number for patients,public, service users and carers to get information about services andsignposting. Were keen to hear about all existing information servicesand are keen for peoples further ideas, so please tell us more in yourresponse to the consultation document.

6 NHS 111 is the new, free-to-call number for access to urgent health services. It will give people a

number to call when they dont know where to go for help. For emergencies, people will continue to

dial 999 ; for anything else, they will dial 111. When NHS 111 is rolled out nationally, it will replace

NHS Directs 0845 4647 telephone number. The service is currently being piloted in County Durham

& Darlington, Lincolnshire, Nottingham City and Luton. Further pilots will be launched in 2011, andinformation from these will provide GP commissioners with options about how best to operate the

service locally.

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4. An Information Revolution: data, security and IT

4.1 The consultation document and the White Paper set the high level visionfor an information revolution. We want your views on these ideas. We willuse the responses to the consultation document to develop a more

detailed information strategy and further plans to put this informationrevolution into effect. A number of key issues that will need to beaddressed as we take the information strategy forward are set out inChapter 6 ofLiberating the NHS: An Information Revolution.

4.2 Weve set out some key issues in relation to data, security and informationtechnology below in response to your questions.

Confidentiality and security4.3The consultation document is very clear about the need for security and

confidentiality. This is a very important issue and we want your views onthe challenges in this area and how they can be overcome, so thank youto those who raised their concerns.

4.4Some areas mentioned in the consultation document include:

Where organisations hold patient or service user records electronically,the systems used must meet appropriate standards of safety, security,reliability and resilience. The NHS Commissioning Board will play a keyrole in centrally developing and maintaining these standards for theNHS. Equivalent standards set by the Department of Health will also berequired for social care and for public health services.

The Information Centre will publish aggregate data. It will not publishidentifiable data, the use of which will continue to be subject to strictprocedures to protect the confidentiality of individuals.

Information architecture and data4.5 One person commented that the information architecture needs to be

understood. We strongly agree with that statement, and informationarchitecture will form a key part of the analysis that helps create ourforthcoming information strategy.

4.6 On the topic of data, it is important that the right data is captured in the

system to improve quality and lead to better health outcomes. To reducethe burden of data collection on NHS staff; we are undertaking afundamental review of data returns covering both DH and its Arm's LengthBodies (ALBs).The review aims to discontinue data returns of limitedvalue, ensuring retained data is of use to both clinicians and patients. Therecommendations from the review shall be subject to a full publicconsultation in 2011.

4.7 The data collections that may be necessary in future will be considered indue course. One person asked about data/information on communityservices. Improving the availability and accessibility of community

information remains a priority and work continues on the development ofthe community dataset.

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4.8 A question was asked about merging reporting systems. We agree thatthere is a need to consider how reporting systems operate across healthand social care as a whole. In our review of the Department of HealthsALBs, we set out that the Information Centre would become the focal point

for national data collections for health and social care, taking over datacollection responsibilities from other ALBs and central data collectors suchas the Department of Health. It would become the single, nationalrepository for data collected from NHS and social care organisations, witha role in making health and adult social care data, including aggregateddata in standard formats, more widely available. The Information Centrewould also have powers to minimise bureaucracy and eradicateduplication in the data that is collected.

Information technology (IT), cost and efficiency4.9 One comment during the webchat was that The NHS is desperately in

need of an information revolution in healthcare but its going to cost a lotbecause NHS systems are backward. We believe that the way we viewinformation and information systems in health and care needs to change toallow for greater innovation and that improved information flows can driveefficiencies in the NHS that will both improve service and reduce costs.

4.10 The information revolution is about liberating information so that moreof it is made available to everyone. IT will need to support the informationrevolution. One person asked about what the costs of implementing newIT systems would be and where the money would come from. As we sayabove, we believe that the information revolution will drive efficienciesacross the NHS. There may be investments required in implementing newinformation flows and these will need to be balanced against the benefitsthat they will deliver. These additional flows will be informed by theresponse to the consultation and by local priorities and requirements.

4.11 On funding the information revolution more broadly, there will be noadditional central funding to pay for the information revolution and anyassociated costs will need to be met within the Department of Healthsspending review settlement. Whilst there would inevitably be costs, whichcould fall centrally and/or locally, the information revolution will need to pay

for itself. We believe that there is potential in the information revolution forimproved efficiency. As we mention in the consultation document, digitaltechnology offers opportunities for enormous efficiency gains within theNHS and adult social care services, especially when integrated with widerservice design. Further information on costs will be set out in the impactassessment which will be published alongside the governments responseto the consultation document.

4.12 A specific concern was raised about NHS Enterprise Wide Agreements(business arrangements with specific suppliers which span the NHS) andwhat savings will be made by the loss of EWAs when trusts will have to

pay more for their licenses than through EWAs. On the specific points:

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The Microsoft EWA purchased Windows 7 and Office 2010 productsfor the NHS, for a total of 300.4m over the period 2007-10. Now thatthese licences have been purchased they do not need to be purchasedagain. The NHS can use these, for free, over the coming years.

The Novell EWA secured extremely good discount levels, but on a

fixed quantity of licences, which were not all used. It was thereforemore cost effective to allow NHS organisations to purchase preciselythe licences they needed. Additionally, some NHS trusts chose tomove to other more cost effective products from other suppliers thatmore suited their particular local needs. Overall the cost to the NHShas reduced.

The National Programme for IT4.13 One question asked will there be a centralised review of contracts the

last government already signed for the health IT services under the lastinformation strategy. In relation to the National Programme for IT, aDepartment of Health review of the National Programme for IT concludedin September that a centralized, national approach should be replaced bya more locally-led, flexible system which enables the local NHS to takeadvantage of technology to meet their requirements. This is in line withbroader changes to the NHS as set out in the White PaperEquity andExcellence: Liberating the NHS. On the matter of contracts, we willhonour our contracts with suppliers, while continuing to drive value formoney. We are negotiating to secure greater savings from our contractwith Computer Sciences Corporation (CSC), which along with changes inexpected local costs, will bring total savings to 1.3 billion.

4.14 One person asked whether it was cost effective to ditch the [Spine] 7.In terms of the Spine, the review concluded that, while replacing acentralised approach with a more locally-led, flexible system ofprocurement, we deliver best value for taxpayers by retaining a nationalinfrastructure and successfully delivered national applications such as theElectronic Prescription Service8. All of these applications rely on the Spineto exchange information.

4.15 For those who asked about the Summary Care Record (SCR)9, theprogramme is continuing. The current Government commissioned a review

looking at the content of the Summary Care Record, the informationpatients receive about the record and how easy it is for them to opt out.This involved a wide range of groups, including the British MedicalAssociation and the Patients Association. The review, which concluded inOctober, reached a conclusion that a Summary Care Record (containingkey patient information; current medications, allergies and adversereactions) will prove valuable for patients needing emergency care. Noother information will be added to the record without the patient's explicitconsent. The review also agreed that all future letters sent to patients

7

http://www.connectingforhealth.nhs.uk/systemsandservices/spine8http://www.connectingforhealth.nhs.uk/systemsandservices/eps9http://www.connectingforhealth.nhs.uk/systemsandservices/scr

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about the SCR will contain an opt-out form to make it easier for them toexercise choice.

Innovation, standards and interoperability

4.16 Questions were raised about the setting of standards. The NHSCommissioning Board will be the authority for setting of informationstandards for the NHS, and ensuring through the commissioningframeworks that these standards exist, are fit for purpose and are applied.The Department of Health will be responsible for setting equivalentinformation standards for social care and for public health services.

4.17 One person raised a concern that there would be an overlap inresponsibility for standards for machine readable data between the NHSCommissioning Board and a new Public Sector Transparency Board underthe new Equality Act. The NHS Commissioning Board would need to work

with other parties to ensure the right standards are applied.

4.18 One person specifically asked questions about the fit between the NHSCommissioning Board functions and the current role of the InformationStandards Board. Further detail on the organisations involved in currentand future information standard setting will be considered in more detail inthe forthcoming information strategy.

4.19 As more and more systems come into the market, interoperability willbe more critical than ever. There are clear benefits to defining standardsthat support sharing between systems on a national basis in collaborationwith key partners. We will work with key partners to build on initiativessuch as the NHS Interoperability Toolkit to ensure that the right standardsare in place, and that they meet current and future needs. It will beimportant to ensure that interoperability enables integration with otherservices such as adult social care.

4.20 One person asked the question of why the consultation document doesnot mention Open Source. The information revolution consultationdocument set the vision in terms of better information, more openness,comparability and transparency but is a document for consultation on the

ideas rather than a discussion on implementation. On the issue of OpenSource and collaborative approaches in general, we agree that the OpenSource provides a number of opportunities however, we believe that thekey value is in Open Standards.

4.21 A question was raised on the plans to improve the quality andinteroperability of electronic health records. We believe that increasing thestructure and coding of clinical data will increase both the quality and theopportunities for the interoperability of electronic health records.

4.22 One person asked about the realistic timescales for electronic patient

records and had concerns about local progress. We recognise thatprogress has been varied across the country in terms of a detailed

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electronic record that can be shared locally across primary and acute care.The Summary Care Record, which will help improve emergency care bymaking medication and allergy details available in any non-planned clinicalencounter, is being successfully rolled out across England. And recentannouncements about the end of the National Programme for IT and a

new direction of greater flexibility and control for local trusts in developingthe information systems they need, will improve the pace andeffectiveness of innovation. Consensus continues to build amongstclinicians and patients about the vital importance of being able to shareaccurate clinical information to improve the patient experience and raisethe quality of care provided.

4.23 One person asked more broadly when a revised strategy would be setout which would paint a clear picture of how the service will move fromwhere it is now to where it needs to be. Our intention is for an information

strategy to be set out in 2011 following analysis of the consultationresponses.

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5. An Information Revolution: specific groups/organisations

5.1 In order to achieve the benefits of the information revolution all health andcare professionals need to continue to play an active role in developingsolutions that are safe, work for the patient and service users and help

improve outcomes. Below, we discuss some of the specificgroups/organisations which were raised during the webchat and theirroles.

GPs and the information revolution5.2GPs will have an important role in the information revolution. Primary care

professionals coordinate the services that patients receive, helping them tonavigate the system and ensure they get the best care. GPs alreadyprescribe and give out information about medicines to their patients. Weenvisage that in time, GP consortia will offer patients a choice of anywilling provider for a range of services where suitable. GPs will be able tooffer patients advice to help them choose between providers in addition toother information that patients will have access to.

5.3 A comment raised on Twitter asked about how people and their GPs willinteract and whether patients would be able to upload information such astheir blood pressure. We do foresee greater interaction and moreconvenient care for patients through better use of digital technology,enabling people to communicate with their clinicians online. A patienttaking their own blood pressure readings and transmitting them to their GPmight be an example.

5.4 One person asked whether there would be open access to all informationabout the running of consortia and where there is a private companyinvolvement would they be subject to the Freedom of Information Act.These are good questions and the issues are still being explored.However we do believe that more information about commissioning ofhealthcare will improve public accountability. Wherever possible, we willensure that information about services is published on a commissionerbasis. We will also publish assessments of how well commissioners areperforming, so that they are held to account for their use of public money.

PCT information related functions5.5 There were a number of questions about the information roles of PCT,

particularly on how these would go forward and how valuable knowledgeand expertise from pilots would not be lost. Wed like to thank those of youwho set out some of these roles and the risks you see related to thesefunctions going forward. The Informatics Directorate in the Departmentwill be considering the future of informatics including IT support services.We are open to considering your thoughts about how these functionsmight best be discharged in the new health and care system as part ofyour consultation response.

NHS Libraries and Information Services

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5.6 Local NHS libraries and knowledge services support NHS staff withaccess to clinical and non-clinical evidence. NHS Evidence also providesquality-assured information about treatments and resources freely and iseasily accessible to all health and social care staff. Thirty-three specialistcollections have been transferred from the National Library for Health to

NHS Evidence.

5.7 One person asked about the role of NHS library and knowledge services inthe new landscape. We would be keen for ideas on the roles that NHSlibraries and information services and NHS Evidence can play in thedifferent aspects of the information revolution from staff work in theseservices and users of them. Given the current economic climate, it is vitalthat clinical and non-clinical information is delivered in a way that improvesquality decision making - for both patients and clinical staff - and alsodelivers a cost-effective and sustainable service. We welcome your viewson how this can be best achieved.

Nurses and allied health professionals5.8 One person asked about how nurses would be involved in the information

revolution, and whether they would have the time or resources to be a partof it. All health and care professionals, including nurses and allied healthprofessionals have a role in the information revolution. We need toimprove the quality of information, and make more information available topatients and service users. We believe that information and informationtechnology can support all health professionals to deliver more efficientand effective care- we need to maximise that potential and are grateful forideas.

NHS analysts5.9 Data quality is and will continue to be important in the delivery of quality,

safe health and care services, and NHS analysts play a key role. Analysisskills are not unique to the NHS but the context and standards used in theNHS are unique and it is therefore these that form the focus of nationallevel activity and support. There are national standards and tools andresources providing support for individuals and organisations in dataquality improvement.

5.10 One person raised the issue of training of NHS analysts. The HealthInformatics Career Framework includes several information analyst typeroles and sets out the knowledge and skills required. For example at aPractitioner level, the expectation is that staff will be educated to degreelevel and be numerate and articulate and able to use office applicationslike spreadsheets and databases for analysis.

5.11 In conclusion, training is mainly a local responsibility and likely tocontinue to be so. We would be grateful for views on analysis in responseto the consultation paper.

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6. Other issues6.1 A number of questions were raised during the webchat on specific health

and care issues which were broader or more specific than the scope ofchoice and information consultations. Our views on some of the additionalthemes raised are set out below. If your question has not been answered,

and is not on the topic of choice or information you may wish to send it tothe DH Customer Service Centre, see link(http://www.dh.gov.uk/en/ContactUs/DH_066319).

Mental health6.2 The White Paper, Equity and Excellence: Liberating the NHS, confirms

that, in respect of mental health, the Government is committed tobeginning the introduction of choice of treatment and provider in somemental health servicesfrom April 2011, and that this will be extendedwherever practicable. We are consulting on the issue of choice in mentalhealth and would be grateful for your view.

6.3Our new Mental Health Strategy for England will take a dual approachlooking at both improving the mental health of the population as a whole,and improving the quality of services. Our overall strategy will includestronger emphasis on early and effective intervention, rather than waitingfor a crisis to happen. The mental health strategy will be published in thenew year.

GPs and GP commissioning6.4As self-employed subcontractors to the NHS to provide primary medical

services, it is largely up to GP practices how they run their surgeries. Thepublic want accessible, responsive and high quality services to bedelivered by their GP surgeries, and the Government believes that GPswill want to respond to this.

6.5 We want to empower people through greater choice of GP. However,generally people can only register at a GP practice if they live within itscatchment area or boundary. The results from our consultation earlier thisyear showed that the overwhelming number of patients and publicresponding support proposals to give people the ability to choose toregister with any GP practicethey want, with an open list, without being

restricted by where they live. People should be able to expect that theycan change their GP quickly and straightforwardly if, and when, it is rightfor them, but equally that they can stay with their GP if they wish whenthey move house. However, there are a range of issues to be workedthrough in more detail and we will publish a policy framework on choice ofGP by early next year.

6.6We also want to provide people with the information to support them inmaking their choices and to support providers to be more responsive. Wepropose to place a greater emphasis on patient generated information,such as patient feedback and patient experience.

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6.7 If there are any ways in which information, information technology (IT), andchoice can genuinely improve your relationships with your GP, wed like tohear about them.

6.8On the issue of commissioning, it will be a requirement for every GP

practice to be part of a consortium and to contribute to its goals. However,our proposed model will mean that not all GPs have to be actively involvedin every aspect of commissioning. Their predominant focus will continueto be on providing high quality primary care to their patients. It is likely tobe a smaller group of primary care practitioners who will lead theconsortium and play an active role in the clinical design of local services.

6.9 Nor will the practitioners who lead the consortia need to carry out allcommissioning activities themselves. Consortia will be able to decidewhich commissioning activities they wish to undertake for themselves andthe activities they may choose to buy in support from external

organisations.

6.10 Reform isn't an option, it's a necessity in order to sustain and improveour NHS. The reforms are far reaching but they also build upon existingdesigns. But we recognise with any significant changes, there may beconcerns - that is why we have been consulting on the details.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)6.11 There were a significant number of specific questions submitted in

relation to CFS/ME for the webchat. On the issue of the impact of choiceof treatment for those with CFS/ME, the current NICE guidelines recognisethere is no one form of treatment to suit every patient and emphasises acollaborative relationship between clinician and patient. Treatment andcare should take into account personal needs and preferences, andhealthcare professionals should recognise that the person with CFS/ME isin charge of the aims of the treatment programme. The choice consultationasks the public for their views on the kinds of choices they would like tosee around the NHS treatment they receive, and this will help us to worktowards giving people the choices that matter to them where clinicallyappropriate. The consultation also recognises that there are situationswhere it may not be appropriate to offer choice of treatment, and asks for

views on this as well.

6.12 Given the interest in this subject during the webchat, we have alsoincluded an Annex addressing CFS/ME issues more broadly.

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7. ANNEX on Chronic Fatigue Syndrome/ MyalgicEncephalomyelitis (CFS/ME)

More biomedical research is needed7.1 The Medical Research Council (MRC) is one of the main agencies through

which the Government supports medical and clinical research and isresponsible for funding almost all recently publicly supported CFS/MEresearch. The MRC funds research through a range of funding streamsand the onus is on researchers and research teams to apply for theavailable funding.

7.2The MRC does not have set budgets for specific illnesses or conditions.Research proposals in all areas compete for the funding available andresearch excellence is the primary consideration in funding decisions

7.3The MRC is committed in principle to funding scientific research into allaspects of CFS/ME, including evaluations of treatments and studies intothe biological basis of the condition. Currently the MRC is funding oneproject relating to CFS/ME, run by Dr P White at Queen Mary College,University of London, which is assessing the effectiveness of varioustreatments for CFS/ME

7.4 The MRC continues to attract a small number of proposals for biomedicalresearch. The problem has been that there have not been enough goodquality proposals coming forward. Recognising that there is scope for anexpanded research programme for CFS/ME, the MRC set up in 2008 a

new group to at new ways of encouraging new research in the CFS/ME.The MRC hopes that this will encourage new research towardsunderstanding the aetiology and subtypes of CFS/ME and lead toadvances in knowledge in this field and the development of newtherapeutic approaches.

Why are GBT and CBT the only management strategies offered ifCFS/ME is a neurological condition?7.5Cognitive Behaviour Therapy (CBT) is used to help and support people

through many physical illnesses, not just CFS/ME, helping them to copemore confidently with their illness, adjust to some of the consequences of

being unwell and feel more in control. When it is used for CFS/ME, CBTcan reduce levels of symptoms, disability and distress associated with thecondition. As with many other conditions, its use does not imply that thatCFS/ME is psychological in origin and many other patient groups are, infact, lobbying for better access to CBT.

7.6With any illness that causes a reduction in everyday activity and exercise,a loss of fitness can occur. By introducing an appropriate GET (GradedExercise Therapy) programme, it is possible within CFS/ME patients togradually reintroduce everyday activities, improve fitness and help them toregain their confidence. Nevertheless, we do recognise that it is important

that GET should be started at a level appropriate to the person concerned,

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that it is flexible, managed at a realistic pace and is supervised by a healthprofessional with a thorough understanding of CFS/ME

7.7 The NICE clinical guidelinerecognises there is no one form of treatment tosuit every patient and it does not force patients into treatments they do not

want. CBT and GET are recommended by NICE for patients mildly ormoderately affected by CFS/ME on the basis that these were theinterventions for which there was the clearest research evidence ofbenefit.

NICE guidelines7.8NICE clinical guidelines are just that guidelines to help health

professionals in their work. They do not replace their knowledge or skills,or override their clinical judgement. Nor do they detract from the right ofpatients to be involved in decisions about their treatment.

7.9 The NICE clinical guideline on CFS/ME emphasises that treatment andcare should take into account personal needs and preferences, and thathealthcare professionals work together with the person with CFS/ME todetermine his or her care plan and that the individual sets their owntherapy goals which are then regularly reviewed. Patients have the right torefuse or withdraw from any component of their care plan without thisaffecting other aspects of their care, or future choices about care.

Doctors dont believe that CFS/ME is a physical condition7.10 There are a wide range of views about the most appropriate treatments

for CFS/ME. We want to gain a better understanding of the condition andways of treating it.

7.11 Doctors and health professionals working in this field are highlycommitted to providing the best available care for their patients. Therapiessuch as graded exercise, cognitive behaviour therapy and pacing wererecommended by the CMOs Independent Working Party and by NICE.

7.12 Comprehensive information to support health professionals is includedon NHS Evidence, which provides authorative clinical evidence and bestpractice. The Map of Medicine also provides clinicians with a

comprehensive evidence based clinical pathway for a CFS/ME to supportclinical decision making

No testing available for CFS/ME7.13 Early diagnosisimproves chances of recovery. Although there is no

specific diagnostic test for CFS/ME, it can be diagnosed by taking a fullclinical history of the patient, identifying the typical symptom pattern andruling out other conditions that can cause similar symtoms.

7.14 Advice on symptom management should not be delayed until adiagnosis is established. This advice should be tailored to the specific

symptoms the person has and be aimed at minimising their impact on dailylife and activities.

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Better quality care for people with CFS/ME is needed7.15 The Governments policy is for the NHS locally to set its own priorities

in response to identified local need and local circumstances andcommission services accordingly.

7.16 As a neurological condition of unknown cause, the QualityRequirements of the National Service Framework (NSF) for long-termconditions apply equally to CFS/ME as they do for any other neurologicalcondition. The NSF was published in 2005 as a ten-year strategy tosupport improvements to health and social care services for people with along-term neurological condition.

7.17 The NSF covers all aspects of care from assessment, throughdiagnosis, information/education, treatment and support, to end of lifedecisions and palliative care. The NSF recognises that there is a wide

variety of neurological conditions; that people have very differentexperiences; and even within specific conditions, the needs of individualsvary widely. A key feature of the NSF is therefore supporting people with along-term neurological condition, whatever its nature, to live asindependently as possible

7.18 The proposals contained in the NHS White Paper offer realopportunities to embed the vision of the NSF through patients driving theagenda, methods to measure healthcare outcomes and increasedautonomy with local accountability.

People with CFS/ME are banned from giving blood because of XMRV7.19 The change to donor selection guidelines, which apply across all four

UK Blood Services, is as a result of recommendations by the UK BloodServices Standing Advisory Committee on the Care and Selection ofDonors, and Joint Professional Advisory Committee (JPAC).

7.20 In the past, donors with a history of CFS/ME could give blood, providedthey had completely recovered and were feeling well.

7.21 However, as CFS/ME is a condition where people can relapse and

become ill again, donor selection guidelines are being changed as aprecaution to protect the donors safety by ensuring the condition is notmade worse by donating blood. This is in line with the requirements of thelegal requirements under the Blood Safety and Quality Regulation where itspecifies that all severe central nervous system disorders and relapsingconditions should result in the donor having a permanent exclusion fromdonation. There is no evidence that a donation from a donor with thiscondition could in anyway harm a patient.

7.22 This change brings donor selection guidelines for CFS/ME into line withother relapsing conditions or neurological conditions of unknown or

uncertain origin, such as Multiple Sclerosis (MS) and Parkinsons Disease.