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MINUTES OF THE PATIENTS FORM HELD ON THURSDAY 16^TH JANUARY 2003 AT CONSUMERS’ ASSOCIATION

Present:  Jonathan Ellis – Help the Aged (Chair);  Karen Thomson – Diabetes UK (Joint Vice-Chair); Clara Mackay – Breast Cancer Care (Joint Vice-Chair); Marianne Rigge (College of Health);  J. Coe (POPAN); Andrew Chidgey (Alzheimer’s Society); Saranjit Sihota (National Consumer Council); Geraldine Amos (Home from Hospital Care); Julia Hookway (National Patient Safety Agency); Victoria Hare (National Patient Safety Agency); Nikki Joule (The Neurological Alliance);  Angeline Burke (AHCEW); Ruth Taylor (Haemophilia Society); Frances Blunden (Consumers’ Association); Danielle Swain (Picker Institute Europe);  Micky Willmott (Age Concern England);  Michael Rich (Action on Pre-Eclampsia); Mike Took (Rethink); David Pink (LMCA);  Judith Wardle (Continence Foundation); Kailas Mahadevaiah (Royal Pharmaceutical Society GB).  In attendance:  Diana Basterfield (Patients Forum) 

Apologies:  Imelda Redmond (Carers UK); Barbara Meredith (Age Concern London); Sheila Dane (Stroke Association); Bob Sang (CAIT); Sobia Chaudhry (National Aids Trust); Brian McGinnis (MENCAP); Alison Morris (MND Association); David Pickersgill (BMA); Elizabeth Manero (London Health Link) 

Speaker:  Marlene Winfield – NHS Information Authority

                 Patient confidentiality consultation          (See appendix)

Minutes of last meeting 

Agreed.

 Matters arising 

In relation to the name “Patient Forum” there was a question asking whether the Commission for Patient and Public Involvement in Health had taken a decision about an alternative name for NHS “Patient Forums.”  Clara Mackay, responded and said that no decision had yet been taken.   

 Jonathan Ellis congratulated Clara on her appointment as a CPPIH Commissioner.

 Chairs Report  

 Membership drive.  It was reported that a membership drive was in progress to increase the breadth and depth of Patients Forum membership.  To date six new Full Members had joined and four Associate Members.  Representatives from one new member organisation, the National Patient Safety Agency, were present at the meeting and Jonathan welcomed them and looked forward to welcoming the other new members at future meetings. 

Meeting with CCPIH.  It was reported that Officers from the Management Committee had met with Sharon Grant (Chair) and Laura McMurtrie (Chief Executive).    The purpose of the meeting was to make initial connexions and to give them a feel for the work the Patients Forum does, the way that it operates and how the Forum can support the work that the Commission will be beginning to undertake in the coming months.  It was a very positive and helpful meeting in terms of making the initial mapping of where there is a potential for a future relationship.   Sharon and Laura were very interested in the work of the Patients Forum.  It was hoped that this would lead to a longer-term relationship in the coming years.  Sharon had offered to come and speak at a future meeting of the Patients Forum once there was a clearer idea of how things were settling down.  

With regard to the use of the name “Patients Forum,” Sharon had indicated that PCT Patients Forums were unlikely to be called that; the new title was not yet known.     This could mean that “The Patients Forum” would be able to keep its name without any confusion. 

Charitable status  

It was reported that since the last meeting the Officers had been obtaining information on how to register as a charity.  The legal adviser had told them that while it was not going to be an easy process there was a potential for the Patients Forum to be registered.   The complications arose due to how umbrella organisations were viewed by the Charity Commission.    

Funding and fundraising  

It was reported that contact had been made with the Department of Health to see if there was any possibility of additional Section 64 funding to support the work of the Patients Forum, particularly during this transitional phase where new systems of public involvement and new structures and formal mechanisms were being developed.   It was hoped to have news about this shortly. 

Information Exchange 

Karen Thompson  (Diabetes UK)   It was reported that the National Service Framework for Diabetes had at last come out together with a user leaflet.  This was available on the website and the Diabetes UK has been disseminating the information out to their members and PCTs etc.    They were now looking at the implementation of the NSF and user involvement at PCT level. Previously there had been local diabetes services advisory groups and these would now be replaced with local implementation groups in order to involve users in service design from the outset.  Other work going on included the Department of Health/Modernisation Agency initiative that was beginning around GPSI’s for diabetes.  They were looking at ten clinical frameworks in different areas.   This tied in with work around competencies focus as well in terms of having services delivered by people who were competent to do it rather than people needing to be referred on to other people – seeing different people for the same thing. 

Marianne Rigge (College of Health)   It was reported that a project for the NHSU was just being completed. This was looking at what people considered were “learning cultures” in the NHS.   They were doing work on parents’ views of neo-natal care for the London region clinical network.  They were also following up on a survey completed several years earlier for the Stroke Association, looking at changes that had occurred in provision since the NSF for Older People.  They were also evaluating the NICE Citizens Council – this would take a couple of years.  

Jonathan Coe (POPAN)    It was reported that they were developing their policy work in response to the Mental Health Strategy for Women and the Sexual Offences White Paper.    They had embarked on a very intensive fund-raising programme to retain the level of their current services.  They would be relaunching the national helpline along with the advocacy and support team with Department of Health funding.  Publicity would be circulated about this. 

Andrew Chidgey (Alzheimer’s Society)  It was reported that they were working on two main campaign issues – the free long-term care campaign (trying to get the implementation of the Royal Commission on Long-Term Care’s view that personal care should be funded).  A letter writing campaign had been going on from AS members to members of Parliament and the Department of Health.     They were also, this year, going to be doing some work on Ebixa, the newly licensed drug for people with moderate to late-stage Alzheimer’s.  This was because people were finding it very difficult to get hold of and NICE had not yet looked at Ebixa and this was causing more problems.   It was also reported that Alzheimer’s Awareness Week would take place in July this year and would focus on the risk factors that increase the likelihood of a person developing dementia.   There would be information on steps people could take to potentially lower their risks. 

Clara Mackay (Breast Cancer Care)  It was reported that their main piece of work was research on the future information and support needs of women affected by breast cancer.  This was part of a project being undertaken to mark BCC’s 30^th anniversary as a provider of information and support. The findings would be launched in a report at a conference in July. 

Geraldine Amos (Home from Hospital Care)  It was reported that they had been discussing service level agreements with PCTs and would probably withdraw from this.  It seemed that PCTs had a lot of control and would change the work considerably and could drop organisations like a hot potato.  It was felt that service level agreements were unreliable. 

Julia Hookway (National Patient Safety Agency)  Julia reported that that she worked in the area of patient experience and patient involvement, taking the lead on sensory impairment and lower literacy and working  on adverse incidents.    

Victoria Hare (National Patient Safety Agency)   Victoria reported that she was the lead in promoting patient safety and patient involvement regarding learning disabilities and mental health.  Her primary remit was to allow service users, carers of service users and the public to have some say and to gather their feedback on specific projects NPSA was working on.  

Nikki Joule (Neurological Alliance)  It was reported that their main work was in supporting the development of the NSF on Long-Term Conditions which had a focus on neurological conditions.   A specific Project Officer, working part-time, was now in post gathering views and supporting members to contribute to the NSF.     The officer had done quite a lot of work on proposals for getting together a number of groups of people using services that could be used both to feed material into the External Reference Group developing the NSF and also to discuss and test out proposals and initiatives coming out of the ERG.    It was also reported that NA was convening a special interest group on the NSF among their members and another meeting of this would be held the following week. 

Ruth Taylor (Haemophilia Society) It was reported that they were providing evidence to NICE on the use of pegylated interferon in the treatment of hepatitis C.  This year they were putting a big effort into information and events for women with bleeding disorders.  They had applied to the Lottery for funding for a worker specialising in this area and if they were successful a event for professionals would also be organised.  It was also reported that they were in the process of producing a booklet on issues relating to gay men with haemophilia. 

Frances Blunden (Consumers’ Association)  It was reported that they were giving evidence the following week to the Public Administration Select Committee on Performance Targets primarily focussing on their work related to ambulances (including response times) and also related to GPs and dentistry targets as well.  They would be publishing – first week of February – a report on patient information.  It was also reported that there were current several OFT investigations relevant to health; one on pharmacies would be published the following day and one on dentistry  The latter had come about due to CA’s super complaint into private dentistry.    It was also reported that complaints on clinical negligence were an issue that was about to surface again. Along with AVMA and a person from one of the lawyers’ associations, CA had met with David Lammy the previous day.  He had still not yet received the Chief Medical Officer’s proposals on clinical negligence but these were due soon.        They were also doing work on risk and patients’ perceptions of risk. This would be published soon. 

Kailas Mahadevaiah (Royal Pharmaceutical Society) Kailas reported that his work mainly concerned extended roles for pharmacists, e.g. medicines management and pharmacist prescribing – both of which had been recognised in the implementation strategy for diabetes and the NSF.   They were always interested to hear patients’ views about what pharmacists could do.   He anticipated being very busy the following day when the OFT report on competition and pharmacies would be published. 

Danielle Swain (Picker Institute Europe)  It was reported that one of the roles of the Picker Institute was to run the National Advice Centre for the NHS Patient Survey Programme.  All acute trusts in England were about to undertake surveys in both outpatients and emergency care and they would be collating the data for this which would feed into performance indicators.  It was also reported that work was going on related to the mental health survey and the PCT survey likely to go ahead in a few months’ time.    Danielle said that her work involved development work and she was trying to encourage quality improvement as a result of the surveys and sharing good practice.  There was a regular newsletter with examples of good practice and they were looking at developing courses for people involved in quality improvement. 

Hew Helps (Chiropractic Patients Association)  It was reported that they were spending the majority of their time trying to raise funds.   They had obtained charitable status in 2002 and were trying to maintain the Association by raising money.  It was also reported that they were compiling a database for their website so that people could see whether the ailments they had could be (or had been) treated by chiropractors. 

Gerda Loosemore-Reppen (RNID)   It was reported that they were hoping that more Trusts would distribute digital hearing aids in the future when a third of the country would be covered by this project.  They had been involved in providing responses to a government consultation on mental health services for deaf people and working with another group compiling a response to the consultation.  It was hoped this would result in extra money being spent on specialist healthcare for deaf people who used sign language. It was also reported that they had been working closely with the implementation team for the community equipment services of the Department of Health.  People were referred to the website:  icesdoh.org.  This provided information to people who were supposed to integrate their community equipment services and had topic sheets covering services for children, sensory impairment, health and safety, contamination guidelines etc.  The website was interactive so people with examples of emerging practice or novel ideas could lodge their experience and contact the team.   

Mikki Willmott (Age Concern)  It was reported that they were doing a lot of work on delayed discharge; this was going through the Houses of Parliament.  They had organised various briefings and had put down amendments to the legislation.   They were working with the Making Decisions Alliance and hoped in February to publish a pack of information on making decisions on mental capacity.  This would be a no-nonsense guide to what was in the proposals for legislation, what mental capacity actually was and to encourage people to write to their MPs and press for legislation to be introduced.  It was also reported that they were working with the Mental Health Foundation to conduct an enquiry into older people’s mental health and a seminar had been held before Christmas to define the scope of this.  The report of this seminar would be published soon.  

Mike Rich (Action for Pre-Eclampsia)  It was reported that they were working on a number of things:  the second phase of their work on producing community guidelines for the management of pre-eclampsia; with NICE to see how they could fit their work into the possibly forthcoming ante-natal guidelines being produced by NICE and the Royal College of Gynaecologists and Obstetricians and on a major campaign to encourage blood pressure monitoring in pregnancy and how people could get involved in this, including pharmacists.  At a secondary level they had just been part of setting up another umbrella organisaton – the Association of Baby Charities.  They had received charitable status two months’ previously.   They were also involved in setting up a new organisation – the International  Pre-Eclampsia Foundation – and they were looking at working on a range of issues with the World Health Organisation around pre-eclampsia in the developing world where it was a significant cause of maternal and baby death.   

Mike Took (Rethink)     It was reported that they had responded to forty seven consultation documents in 2002 – this was a 50% increase on the previous year.   Mike had noticed that Rethink was one of the charities benefiting from Celebrity Big Brother and M & S Christmas cards.  This was a major event for a charity.     The main work was the Mental Health Alliance chaired by Rethink.  They understood that the bill was withdrawn from the Queen’s Speech at the last moment and would be introduced by Alan Millburn the following March, although there was uncertainty about this. He congratulated the Making Decisions Alliance for their campaigning which prompted the Lord Chancellor’s department to get the Mental Health Incapacity Bill underway. 

David Pink (LMCA)  It was reported that with the regard to self-management and expert patients,  they were looking to relaunch and change their strategy to look at issues that went beyond the current NHS expert patients programme and what would happen when that came to an end.  They were not entirely convinced that the Department was thinking about those issues and somebody should do some thinking about them.  It was also reported that they might increasingly have a role in co-ordinating the influence of NICE.  David was slightly reluctant about this but said that as he used to work there it might equip him to do the job.  They had  taken on the chairing and hosting of the NICE ‘PIN’ group.  This was a mutual support network for people engaged in NICE guidelines and consultation.    The other big area of work they were involved in was the Long-Term Conditions NSF. 

Judith Wardle (Continence Foundation)   It was reported that they were following up the very successful conference held last October on integrated continence services and they were planning another conference in November.  They were looking for some help from anybody who had managed to persuade PCT boards that milestones in NSF’s should actually be met and also anybody who had managed to persuade consultants at tertiary level that when speaking about an integrated service of any kind that was supposed to go from primary to tertiary, this included them.   

Marlene Winfield (NHS Information Authority)  It was reported that they were about to start, with the Consumers’ Association, a research project looking at what people expected from the electronic health record and what the barriers to use and to access would be.  This was being done as a way of scoping what they needed to deliver in the first phases of the electronic health record.  It was also reported that they were compiling a manual for NHSIA staff on how to get best use out of lay representatives.    They had based it on the experience of early lay representatives who, in Marlene’s time at NHSIA had sat on their committees.  This manual was now out for quality assessment with members of their public reference group.  They would then take it on a roadshow round the staff along with a member of the public reference group to do some briefing/training on it.   

Roger Battye (National Association for Patient Participation)     It was reported that they were now working very closely with the National Primary and Care Trust Support Unit  – part of the NHS Modernisation Agency – on the competencies of PCTs in engaging the public.  CHI was also involved in this.   It was also reported that they were working on a very specific project related to patient libraries managed by patient participation groups around the country.  This was something NAPP encouraged as it was a way of getting information to patients.   What they wanted to do was to build a recommended book list.  He asked if Patients Forum members would be willing to comment on any book lists he might circulate through the PF network and make recommendations.

Jonathan Ellis (Help the Aged)   It was reported that they were also working with the Making Decisions Alliance and on issues related to the delayed Community Care Discharges bill  - the bill that would introduce the fines for local authorities when patients had their discharge or transfer from hospital delayed.   They were also doing some qualitative research on older people’s views of community nursing, in terms of what people value and want from a community nursing service, including district nurses and health visiting.  Recently they had launched a falls prevention programme that was designed to take the biomedical research evidence from their division Research into Ageing around what actually worked in preventing and managing falls in older people and turning this into real policy and real practice that actually made a difference.  It was much harder than it sounded to turn abstract research into real practice.  

Any other business 

Email mail outs.     The chair reported that as people would know,  the papers for the meeting had gone out in email form rather than in paper form.  The purpose behind this was to reduce the costs of distributing papers for the meeting.  Emailing was being operated on a trial basis to see how it worked and if anybody had any particular difficulties with receiving papers on email they were asked to notify the office. 

Date of next meeting: 

Wednesday March 12^th

^{__________________________________________________________________________________}

APPENDIX

Marlene Winfield – NHS Information Authority.      Patient confidentiality consultation

Marlene Winfield began by thanking the Patients Forum for hosting the consultation and said that it was one of a number of patients groups being consulted. The consultation was very wide-ranging – patients, carers, citizens, the NHS, regulators and other organisations that provide care now (Social Services) and will provide more caring services in the future (chemists, pharmacists, hospital chaplains etc).    NHSIA was getting a very good response from patients and patient groups and these responses were keeping pace very well with responses from the NHS.   This was very good news. 

Marlene said that they had made a big effort to try to reach a range of patient and public groups.  They had telephoned a lot of black and minority ethnic groups in the north west and in the south east and had told them about the consultation and asked if NHSIA could go to a meeting.  Some of the groups had invited them to a meeting.   They were also doing one to one interviews with forty people who either lived in very rural areas or were frequent movers so they were trying to pick up people like Travellers.     They were also doing some focus groups where they brought together a mix of clinicians and patients and other people working in the NHS to see if something different would emerge from a discussion with lots of different people.   They were trying in all sorts of ways to get the views of patients, carers and the public. 

What they were getting views on     

Marlene described how the proposals were formulated.  She reported that the consultation was part of a national IT programme.  There had been an announcement by Lord Hunt on December 12^th saying that £2.5bn was being allocated to IT in the NHS.  This IT was initially concentrating on delivering three things for patients, carers and the public: 

1.  an integrated care record – there would be an electronic record, parts of which could be shared with the people who needed to provide care for the patient and indeed with the patient themselves.    The plan was that eventually everyone would be able to access their health record, even in their own homes.     

2. On line booking so that an individual would be able to book an appointment with the GP and the GP would be able to book an appointment with the hospital on line

3. Electronic transfer of prescriptions   

What the electronic records should achieve

The first thing patient groups were saying that they wanted electronic records to eliminate was the problem of lost records.  People also complained that they had to endlessly repeat their name, address, post code, date of birth, the reason for visiting the hospital.  This was not only annoying but it undermined confidence when going from one room to another in the same hospital and staff did not know who the patient was. The groups also wanted the electronic system to give them a say over who saw their records and to enable them to compare performance.   Post Bristol that had become even more of an issue.   There was a need for systems that could extract anonymised information so as to be able to alert everyone to which hospital, to which doctors were performing well and which were underperforming.  The Bristol report said that this was the kind of information that could be available to patients.    Also sounding early warnings on poor performance.   

Patients said they would like: 

·   systems that improved the quality of their data. By having access to their records they would be able to spot factual mistakes and this would open up a whole area in the future regarding how it would be possible to have things taken off a medical record when they were considered to be prejudicial 

·     the provision of evidence for patients’ decisions and for the decisions that clinicians made with them    

·     the provision of seamless, convenient care so that it was not always necessary to visit the doctor. This was particularly so for people managing long-term conditions.  To foster doctor-patient partnerships to help people care for themselves

While wanting all of these they, of course, also wanted their confidentiality protected so there was a tension between sharing information to achieve all those things and protecting people’s confidentiality.  

In October 2001 the NHSIA, via a MORI poll, asked “Who should be able to see your medical records?” 

 As would be expected, most people wanted their GP to be able to see their record as well as hospital staff giving care.   When it came to other surgery staff, the most hated person was the receptionist.  In the later research, everyone had a story to tell about receptionists breaching their confidentiality.    Nearly two-thirds of people didn’t mind medical researchers seeing their information but many fewer wanted a social worker to be able to see it, or administrative and managerial staff.      

In response to a question as to whether people differentiated between nursing staff and clerical staff, Marlene said that they probably did not for this question.  She continue by saying that more detailed research that had been done by Sheffield University where they had taken vignettes of different people using different types of patient information for different reasons and they had asked people to indicate which ones they thought should be allowed and which not.    NHSIA, working with the Consumers’ Association, had also done some quantitative and qualitative research in Spring 2002.   They had carried out one to one interviews with people who had particularly serious needs for privacy:  women who had had terminations, people with HIV/AIDS, people who had serious genetic, inheritable disorders and people who were mental health service users.  They had also done some one to one interviews with people who did not speak English but spoke Urdu, Punjabi and Hindi, to see if there were any issues from that.   They had also done some focus groups with people who had recently been referred from primary to secondary care – general patients – and based on what they had said they then carried out an omnibus face to face survey with 2000 members of the public.   At very high levels these were their responses: 

·    On the whole, I trust the NHS, but I would like to be asked or at least informed

·      I don’t want just anyone to see my record

·      People should see only what they need to know to look after me

·      Receptionists don’t need to see my medical details

·      No one should see some things, not even my GP

·       Managers and researchers don’t need to know my name

·       I’d be reassured if arrangements for sharing information were spelled    out 

Based on what had come out of that research, NHSIA had put together one of the documents that is in the Consultation Pack and this set out the principles by which a confidentiality managing system should operate.

 ·      Patients have access to their records

·      Protect what most concerns patients while not imposing impossible
        burdens on the NHS

·      Tell patients when information is shared

·     Use identifiable data only for care and quality control and rely on implied
       consent

·     Ensure people see only what they need to know to provide care

·     Allow patients to control access to particularly sensitive information

·      Allow clinicians to withhold limited information as allowed by law

·     Anonymise data not for direct care of patients or only share it with
       patients’consent, or by law, e.g.public health requirement

·     Monitor who accesses patients’ records and provide alerts when there are
       breaches of rules 

Marlene then gave an example, using slides, of how these principles would work in practice.

Marlene continued by saying that in order to deliver this model, when somebody logged on to the system they would be authenticated in three ways:  the system would ask “Are you who you say you are?”  “Are you in a relationship with this patient that entitles you to see the record?”   For example a clinician who sees one of their neighbours in the hospital could not just go in and read the record unless they were registered as providing care for that person.  Lastly, if the person could prove that they were who they said they were, which part of the record would they be able to access, all or only part of it?  

There would also be a need for systems that would effectively anonymise information both reversibly and irreversibly so there would have to be some sort of body that received patient identifiable information in the NHS and anonymised it before it was sent it on to researchers.  Only that body would be able to have the key for putting the patients name and details with the research date.     All the researcher would get was  e.g.“38 year old female, this part of the country, with this medical history.” 

There would be the need to record and act on patients’ desires to hide information and clinicians desires to hide information.  However, there would need to be the ability to override this in an emergency.     There would also be the need to record everyone who saw a record and to send the proper alerts when rules had been breached.   Where necessary, for instance, if a researcher said they could only work with patient identifiable information, there would need to be a system for getting patient consent.     

Marlene stated that another document NHSIA were consulting on was the National Information-sharing Charter.  In their research patients had said that the most re-assuring thing for them would be if all the arrangements for sharing information were set out clearly so that they would know what was happening and they would know when they were meant to be told and when they were not.   A first draft had been produced of a Charter between the NHS and the public.  The Charter says “We will do these things as the NHS” but it also asks patients to do some things too.   

Marlene stated that there was a very long Code of Practice for NHS staff -  one of the ways to enable them to deliver all of this.  This ran to 42 pages and was also in the consultation pack along with the script of a public information video.  This would form part of a public information campaign to tell people what kind of information the NHS held on them; how the NHS used it and why; what safeguards the NHS gave them for their confidentiality and what their rights were.   Video was chosen because it was a particularly flexible medium, it could be dubbed in languages, there was no need to be able to read, it could be put on patient websites, it could be played in all sorts of waiting rooms etc.   However it would only be one method of communication, there would be others.     NHSIA would be particularly interested in getting Patient Forum views on the information contained in the video and also on the best ways to make it available. 

The consultation period had started on the 22^nd October 2002 and would finish at the end of January 2003.  The questionnaires could be filled out on the NHSIA webside  www.nhsia.nhs.uk  or in written form.  A consultation pack could also be obtained by calling the information line 08453 66 00 66. 

Simultaneously NHSIA had been working on some of the technical requirements.  They had looked at how access was recorded, how to deliver different views based on role, how the sealed envelope would work, etc.   By the end of March NHSIA wanted to have the technical specifications ready so that they could go out to suppliers with specific details about the systems that needed building.  They wanted to begin some pilots in 2003  

Marlene concluded by thanking everyone for their help with this consultation and added that there was a need to enter a new relationship with the public and NHS staff, where the NHS developed information services with patients, not to do it to them.   She urged all those who had not yet sent back the consultation questionnaires on all or some of the documents to do so before the deadline.

Comments and questions

Following the presentation questions were raised and comments and below are Marlene’s notes of these points.  If those raising them wish to add anything further, please do so in an email to Marlene.  Also those of you not at the meeting may wish to send comments to Marlene at:  Marlene.Winfield@nhsia.nhs.uk

CONSULTATION WITH PATIENTS’ FORUM

January 16, 2003

Public information and education

There needs to be very good public education and information for patients about confidentialty .  Education should start in schools.

Patient sealed envelope

Can clinicians see information sealed by the patient and another clinician?  Will they know that their own information has been sealed from general circulation by the patient and another clinician?

Can a clinician looking in the sealed envelope see all the information that the patient has hidden or just what they need to know?

Are there things that cannot be hidden by patients, eg. Information that might cause someone else harm such as the fact that they are prone to violence and those who treat them might be at risk?

Does anyone have the right to refuse to allow information to be hidden because it might harm the patient?  Should the patient be allowed to take these risks if he or she chooses, provided it doesn’t put anyone else at risk?

Will patients be happy with this degree of responsibility?  How will they know what information is relevant to tell a doctor treating them?

Access rules

How will carers get access to information about the person they are caring for? 

Who will make access decisions for children?  [Marlene:  These two issues have been raised often in the consultation and require clarification of the law, which the technology can then implement.]

Will information given about the patient to clinicians by carers be protected from disclosure to the patient when the carer wishes it?

Will people with multiple health problems be helped or hindered by the proposals as many clinicians will be treating them?

Clinician sealed envelope

The circumstances under which information can be withheld from patients because of serious harm are not defined in law and need to be clarified.  This concept might be too paternalistic for the modern age.

If a clinician can put test results and other information ‘on hold’ from disclosure to the patient, there needs to be an alert mechanism in the system to remind them they need to act on it or else it could be forgotten.

Will the mere fact of the existence of the clinician’s sealed envelope cause anxiety to patients?

Resources 

Time will be needed to explain to people what is in their record.  Will access time be built into the consultation of the future? 

Sharing outside the NHS 

What about sharing with other professionals, such as pharmacists?  Will they be expected to follow the same rules and procedures?  It would be helpful to know what is on the horizon so they can begin thinking about how to modify their own computer systems. 

Where will the boundary be drawn in future between health and social care?   Health care is constantly being extended into the social care field.  Patients need to know where the boundary lies when it comes to passing on their information. 

Other issues

Professionals need training in how they write notes so that patients will be able to understand what is in their records, and so that they do not write things that are abusive or prejudicial. 

There are complex philosophical, ethical and legal issues, all closely related, that come into play. 

The task is huge and complex.  Just the ability to identify 60 million people so that they can be cleared to access their records is mind-boggling.  Is it doable?  What are the timescales?  [Marlene: it is not doable all at once.  Early systems will be basic and evolve over time.]

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