Consultation by the GMC on draft revised guidance on Confidentiality

This is another issue for public consultation. The previous guidelines were published in 2009, and, as the GMC says, there have been developments since then.
The consultation ends on February 10th – and there are two shorter versions – for doctors and for patients and the public – if 36 questions are too many!
Here is my take on the draft guidelines: all opinions are my own.

National Issue
GMC Consultation on draft updated guidance on confidentiality

1. Headline issue: Confidentiality guidance from the GMC for all doctors on confidentiality: update on 2009 guidance.
a. Topic: Confidentiality (part of Duties of a Doctor) guidance for all doctors and data sharing
b. Implications for primary care:
• this applies especially to GPs who are Data Controllers and where the responsibility for data sharing will lie with the individual doctor rather than the organisation.
• The draft guidance is considering the sharing of patient identifiable data under three headings, and there is no clear definition of what is contained in each e.g. Hampshire Care Record:-
1. direct care purposes: contribute to an individual patient’s diagnosis, care and treatment
2. indirect care purposes: contribute to the overall delivery of health and social care but which fall outside the scope of direct care (for example health service management, research, education and training)
3. non-care purposes: not connected to the delivery of health or social care but which serve wider purposes (for example, public protection, the administration of justice, financial audit or insurance or benefit claim
• direct care appears to be applied to individual patient referrals: indirect care to health service administration etc. It is not clear where population based sharing of individual patient records e.g. the Hampshire, Oxford or Leeds shared care records, or records shared in potential integrated care records fit in this picture: i.e. where the records of patients who are not in receipt of care from any organisation outside their practice – if that – and have not given either implied consent (not having been referred & having no reason to suspect their records are being shared) or explicit consent (not having been asked).
• the lack of definition on the three areas makes discussions of implied and explicit consent and when they apply unclear.
• Not clear who is to be held responsible for ensuring that patients have easily available information – or that this information has been conveyed to the patients, especially where the doctor is not the data controller. (Fair processing issue)
• Not clear where responsibility lies for ensuring the reliability of recipient organisations.
• the legal section appears inadequate and confused – especially regarding the effects of the HSCA 2012 and its requirements for obeying Directions issued under it.
• Clarity on the laws and regulations requiring reporting/sharing without patient consent and the areas where information sharing is legally prohibited, with or without patient consent (e.g. Human Fertility & Embryology) would be welcome
c. Implications for health informatics. Not clear
d. Any information or clinical governance issues.
• There is very little concrete advice on IG, how any IG considerations should be applied by doctors in a position to share or authorise the sharing of patient information, and where the responsibility lies for ensuring that the recipient of the data maintains the patient’s confidentiality.
• Lack of clarity about “prophylactic sharing” i.e. making records available to others not involved in the direct care of an individual for a specific purpose e.g. population based shared/integrated records where it will not be known in advance what information is or might be relevant.
• Advice that statement that the patient has consented may be accepted without question
• Combining numerous “non-care purposes” with very different legal and ethical issues under one heading will cause confusion: “public protection, the administration of justice, financial audit or insurance or benefit claim” have different legal requirements and need to be considered separately, with the legal requirements for each identified.
• There is inadequate clarification of the change in circumstances and legal issues leading to the need for the GMC to review its advice on Confidentiality.

e. Why does PHCSG need to discuss/have a view on this topic.
• This is a public consultation on the Duties of a Doctor with regard to Confidentiality, and is specifically intended to update the Guidance issued in 2009 in view of legal and other developments since then.
• The doctors most likely to have to take individual decisions – or be held to account over breaches – are likely to be in primary care, mainly in general practice.
• It would be unfortunate if guidance given by the GMC differed from that given by other regulators – e.g. CQC and Monitor – or other bodies involved in the issuing of guidelines on confidentiality and/or data sharing e.g. the National Data Guardian (not mentioned), CAG advice to HSCIC and HSCIC (s271 HSCA 2012).

2. Background for issue
a. Official pronouncements/documents/links (with description of relevant content) There are 36 questions: short versions for Doctors/HCPs and public also available. the draft guidance. Unfortunately changes from the 2009 guidance are not highlighted.
• Consultation runs from 25th November to 10th February
• To enter the consultation, it is necessary to register for GMC consultations. *this is not the same as a registered doctor’s registration for the GMC website*. real identity is not required but an email address is.

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Consultation on the role of the National Data Guardian

The PHCSG Committee has decided to look at various relevant national issues, and would appreciate your input: this is a new initiative, so here is the firat sample.
I prepared the brief (comments on the format also welcome) and accept responsibility for any views expressed.

National Issues
Consultation on the role of the National Data Guardian
Prepared by Mary Hawking

1. Headline issue : DH Consultation on the Role of the National Data Guardian (NDG)
a. Topic: Consultation which will be used to inform legislation setting the role on a statutory basis.
b. Implications for primary care. The NDG will have considerable powers over the distribution, use and information governance requirements for health & care data, including primary care data. There is an implication that the data distribution may be to organisations outside the UK – EU is not mentioned – and therefore outside the UK jurisdiction. There is no reference in the document to patient objections,
i. The National Data Guardian will be advising (enforceable advice) on the use, and controls on receiving organisations, of data which might allow identification of individuals including
ii. The Role will apply to England only but “in cases where health & care data is sent to an organisation outside England (including outside the UK) the NDG’s role would be to make certain that the sending organisation in England has taken all the necessary steps to ensure that the receiving organisation has robust arrangements in place”
iii. The National Data Guardian will make referrals to the CQC & ICO on data & information issues for consideration of action
iv. The NDG will be able to refer individual regulated health care professionals or groups of them to their regulating body or employer e.g. GMC and provide advice on information governance issues
c. Implications for health informatics
i. The consultation deals – at a high level – with the distribution of health and care data, and the regulation of professionals and organisations using existing regulators (who might be impacted – e.g. CAG)
ii. I am not clear from the consultation document how introducing another layer of regulation/advice might impact the current use of effectively de-identified data nor how data is to be identified.
d. Any information or clinical governance issues
i. This is all about information governance and how the new role would relate to existing organisations
ii. No mention of advice regarding the acceptability of data collections or patient objections
iii. No indication of intentions to develop/publish TOR (this consultation is to inform legislation) and no indication of statutory powers of the supporting reformed successor to the Independent Information Governance Oversight Panel
e. Why does PHCSG need to discuss/have a view on this topic
i. This is going to be an integral part of the information governance mechanisms in health and social care, and embedded in statute: the details – most of which are fundamental – appear not to have been decided yet
ii. If PHCSG wants to influence the development of this role and its relationships to the numerous other organisations with powers/responsibilities in this field, some response and/or view will be needed.
2. Background for issue
a. Official pronouncements/documents/links (with description of relevant content)
b. Potential & described consequences from these pronouncements
c. Organisations involved
d. Any public consultations This is a Public Consultation lasting from September 17th to December 17th 2015.
3. briefing
a. this is going to be a very important role, and setting it in statute (with possibly the formation of yet another ALB) is likely to ensure that it will become permanent (or at any rate last until the next major reorganisation and then be modified rather than abolished)
b. The role was created for Dame Fiona Caldicott, born 1941 so now 74: there is nothing in the consultation on the TOR, how and by whom they might be developed and how Dame Fiona’s successor will be selected.
c. The IIGOP is mentioned as having been established to support the NDG and will be replaced. This will obviously be a large and powerful body (the role of NDG in not going to be able to be performed by an individual acting alone)
d. The relationships between the NDG, CQC, ICO, professional regulatory bodies, CAG – which may have its role redefined, HSCIC , NHS England and other bodies and non-governmental bodies within and outside health & social care in England (including Children’s social care) is not clear from the consultation document. As this is important, PHCSG input might be useful
e. There is no mention of any power to require exclusion from data collections or releases due to patient objections – which are not mentioned.
4. Points PHCSG deems need to be considered
5. references/links/documentation
a. Consultation document
b. Dame Fiona Caldicott’s view
c. First Annual report of the IIGOP

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What’s happening in

I posted this to the BCS PHCSG discussion list – and it has been suggested it should be more widely available – so here it is!

Although there is little information available on the progrm, quite a lot has been published – or posted – which is relevant to the program.

As you may know, I take an interest – but have no inside information: who does – when even information which it has been agreed would be published isn’t – and previously existing information has ben removed? (In future, I will have to save all useful pages on the NHS England and HSCIC websites – in case they are removed later).

So – update.

I had a response to my repeated FOIs about when the Care Data Program Board papers since January 2015 would be published to say that they would be published “by 31st July”. They haven’t been published yet (12th August 08:46) BUT there is some advance: the Care Data Advisory Group notes for May and June *have* been published – and from them it is clear that the program is steaming ahead regardless: letters have been prepared: Directions have been drafted and approved by everyone involved (NHS England and HSCIC Boards) for the Pathfinders: DH is being consulted about the timing of Directions regarding patient objections – whether they will be issued before or after data extraction. Recommended reading – probably the only place you will get any official information – even incomplete…

There have been a number of commentariess which are of interest, directly or indirectly.

Students at Cambridge doing a Masters in public policy do reviews which are published: this year the winner was on the Care Data Program

(last year was on NPfIT)

There has been a good deal of dicussion about the need to Build Trust – but very little about what that actually means in practice. After all, “Trust” is nuanced – not absolute. I trust different people over different things – most people do: “Trust me – I’m a doctor!” doesn’t mean my financial advice is worthy of being trusted.. and sometimes I will be wrong , for a variety of reasons – including lack of the ability to foresee the future.

So look at the official roadmaps (especially 2.2 and 4)

What seems to be missing is any realisation that to get people to trust you, you need to show that you are trustworthy…

A view from an interested party

and a Jen Perrson blog – read all the sections: lay involvement

and finally, a TEDxHouse of Parliament talk by Onora O’Neill on the question of trust: given in 2013: I do wonder who was in the audience…

DOI I was the BCS PHCSG GP nominee to the GPES (General Practice Extraction Service) IAG (Independent Advisory Group) which scrutinised requests for data from general practice patient records (if, that is, GPES was to be used for the extraction): these included – and the considerations needing addressing before ‘proceding to extraction were not always welcome – but mostly acted upon.
The IAG was abolished on 30th June, before the replacement for its functions of independent scrutiny and providing assurance to GPs and their patients had been agreed or put in place. The intention is to separate the roles of considering requests for data and the applications for release of data between the SCCI (which is a subcommittee of the NIB i.e. not within the HSCIC) and IGARD (TOR out for consultation until 30th August 2015)
The minutes of the final GPES IAG meeting on 11th June 2015 are worth reading for the most comprehensive account of the plans for the replacements available, as far as I know: and the final statement from the IAG – in AOB at the end – has been distributed – I hope – to relevant bodies.

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Can Integrated Care satisfy all of Fred’s needs (including Patient Empowerment)?

Fred has given up hoping that using Apps will put him in charge of his life[1] – medically and socially – and is now looking at this year’s publicised solution to his self-care problems[2] -Integrated, Patient Centred Care – instead – and he has his doubts about this as well!

As far as Fred can make out, Integrated Care[3] is mainly about organisation or ways of working between organisations (he thinks this would be a very good first step) but in the examples he has seen such as Torbay[4] and the Pennine Partnership[5]  – the services covered are very limited and he can’t see much place for Patient Autonomy (great that Torbay always think of Mrs Smith – but what does Mrs Smith think of Torbay?) and Choice.

So Fred started to make a list of all the things he needed – and some ideas on how they might be addressed.

Fred’s list of things he needs to be in control of – and areas needing improvement…:

  • “a single care coordinator, whose role it is to act as a point of contact between the patient and the multidisciplinary team (MDT) (or teams?) and to facilitate the delivery of integrated care”[6] He’d settle for his much missed Community Matron.
  • Re-organisation of hospital services, including
    • appointments (making, altering, cancelling and rescheduling),
    • hospital switchboards: he has difficulty getting through, and is tired of being passed to the wrong department or secretary – who may be on leave or absent.
    • making Out Patients (OPs) run on time (often runs late – with all the patients booked for the same time) with patient records & results available and doctors who know his case
    • Arrange disabled access including disabled parking near OPs and not occupied by cars without Blue Badges
    • stream-line hospital transport and co-ordinate with changes in appointments without expecting Fred to spend hours trying to do so himself. (If he could be sure of disabled access, he mightn’t need transport)
  • Improve – or establish – communications by whatever means the AQPs[7] and the NHS can manage:
      • Fred’s team[8] -> AQPs and other care providers/MDTs
      • AQPs & other care providers/MDTs -> Fred and his team.
      • Between AQPs (why can’t they copy letters sent to GP – and Fred – to each other routinely?) and other care providers where relevant
      • Record access (electronic and remote) –
        • Access to tests and results held or ordered in same or different organisations
        • Patient access to whole GP and AQP records
        • GP access to AQP records
        • AQP access[9] to :-
          • Relevant parts GP record
          • Other AQP records
          • With Fred’s consent
      • Medication safety checks (at present Fred consults his local pharmacy – and GP list may not contain meds given by AQPs)
      • Arrange monitoring so tests are only done once and all at the same time & results available to all the AQPs , the various NHS hospitals and services – and the GP and Fred when they need them.
      • Making sure the various appointments and tests don’t clash – or interfere with important social matters e.g. football.
    • Plans for emergencies (including dog care) and single point of contact to implement them
    • Independent Living (Fred doesn’t want to go into Care (who would look after the dog?)
      • House adaptations – ramp, wet room, kitchen (organised by Community OT)
      • Mobility – automatic car, pavement buggy, crutches, wheelchair, artificial leg
      • Supplies
      • Chores – cooking washing-up, housework, cleaning, laundry
      • Socialising & leisure
      • Dog – feeding, letting out, walking, poop scooping, vet, respite care.

He has got some of these organised – especially on the social side (meeting his mates in the pub is much easier with the pavement scooter – and he’s really good at shopping on line!) – but really integrated care must, in Fred’s opinion, include guidance through all the options and pitfalls in getting the basic support he needs as well as getting some joined-up thought on his medical conditions[10] and how management of one is affected by management of the others.

Now he is wondering whether any of the various models of Integrated Care such as Vertical Integration with either hospitals or GPs in control, Horizontal Integration – including all out of hospital services with or without social services and social care, Medical Home services – which seem to include hospital, community, GP and social services – or any other model could – or would – be able to deal with all his needs (including limb-fitting, intermittent bouts of depression and the dog) or allow everyone involved in his care to have the information they need at the time and in the place they need it[11]: in the circumstances, he feels he would be safer if he was in control – supported by his dedicated care coordinator and GP – than trusting entirely to the MDT or MDTs of Integrated Care – who don’t understand his need for a life outside his disabilities and LTCs!


[2] He has a lot – all being cared for by different teams and/or AQPs who never seem to communicate with each other – & often not with Fred either!

Fred has diabetes (DM), COPD, rheumatoid arthritis (RhA), and a history of depression associated with his LTCs and left leg amputation: the medical, social and practical difficulties and his efforts to find a way of dealing with them (and his dog) are the subjects of this blog.




[6] p36 The rest of the report deals with re-organising delivery of general practice..

[7] Fred was told that his care, under the Health & Social Care Act 2012 might be provided by non-NHS organisations called AQPs – Any Qualified Providers: he is still wondering whether this is one of the reasons for the poor communication around his care.

[8] Fred’s Team consists of Fred, his care coordinator and his GP & practice

[9] Fred would like to see this automated and enforced, so that the AQPs would have to see his records, whether they wanted to or not. He suspects that most of them don’t admit to the existence of the others – and some are incapable of using IT in any form.

[10] Fred has COPD (for which he sometimes needs to use his emergency supplies of steroids and antibiotics and insulin treated DM – where his blood sugar gets out of control with either infection or steroids: neither Care Plan says what he should do ref the insulin when taking steroids – or whether the injections the Rheumatology Specialist Nurse “don’t forget these will make you more liable to infection” gives him – have to be taken into account as well.

[11] Fred is assuming that if Integrated Care is introduced, mobile devices, good communication (including assignment of responsibilities) and better intra-organisational organisation will be a core requirement.

I suspect he is over-optomistic.

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Fred’s saying, “You just don’t GET IT!”

Fred’s life has improved: he’s got a wheelchair (grade 3 – for road use [1]), feels in charge and – predictably – is no longer suffering from Depression(QOF).

However, he is increasingly frustrated about the apparent lack of any plans to address his concerns about his care – and avoiding becoming a statistic in the costs of medication errors!

Current situation:-
Fred – now 73 – had a leg amputated 3 years ago along with a series of diagnoses including diabetes, COPD, rheumatoid arthritis and depression (Fred always said that if you weren’t depressed in his situation, you’d be out of your mind!)

Since then he has become very computer literate (he’s not going to let on to next door and her grandson: enjoys working with the kid!) – but he has not been able to solve the basic problem, which is that his various different conditions are being looked after by different “AQPs” who do not appear to have any means of either communication or knowing what the others are doing or prescribing.

(He started with a Community Matron who told him all about possible interactions and scared him stiff: unfortunately, due to cut-backs, her post has been abolished, so now he’s on his own apart from his GP)

So Fred was very interested in what NHS England was planning.
Unfortunately – from Fred’s point of view – it doesn’t seem to be providing what he feels he needs in order to stay safe.

Looking at the various central initiatives.
The best choice would seem to be a Summary Care Record providing medication and adverse reactions.
(this came from looking at NHS Choices)
Unfortunately, this seems to be just for Emergency Care – and the lovely rheumatology nurse practitioner who has had a marvellous effect on his fingers wasn’t sure that her service could – let alone would – be able to check it every time they changed his rheumatology medication!

(and are the things she prescribes and administered included? they are not on his repeat prescription list!)

So what about patient record access – which he could – if he wanted to – share with his various health care providers?
Well, this isn’t totally satisfactory either: Fred wants access to his whole GP record (he thinks it’s the only way he’ll be able to find out what the AQPs have been doing to/for him!) BUT he wouldn’t want to share all of his GP record with all of the other people providing his medical care: why should everyone know what he said to the psychiatrist? Just because he felt suicidal at the time (well, wouldn’t you?) why on earth should this be of interest to his other AQPs? Even more worryingly, might someone in their organisations be supporters of Dignitas? And there are an awful lot of people in the town who know him and some of them might be nosey…
Now if he could have two access permissions, that would be useful: one for him to the whole record, and one which he could share confidently with the AQPs since it would only contain the information he knew about and approved, that would be ideal!
Unfortunately, NHS England has scaled this back and is now only aiming at ordering prescriptions and booking appointments.. which he can do already!

Then there is
Fred has looked at this – and doesn’t think it would help his problem – which is one of direct care, not secondary uses. His GP has asked him not to dissent (“Look, Fred, this is supposed to help commissioning: if the CCG doesn’t have you included, it will definitely affect their commissioning plans!”) – but Fred is still considering his position: should the Public Good (and he doesn’t quite see how uploading his personal records would help here: his working life didn’t inspire him with trust in assurances of total confidentiality: as he used to say “Just because you’re paranoid, it doesn’t mean they are not out to get you!”) outweigh any risks to him? (I’m not sure what he is worried about – but then why should I?)
He’s been looking at the information available – , and an apparently different GP National User Group viewpoint – and is very glad that there will be a National Information program: he’s looking forward to getting more information in January.
However, his main problem is that he doesn’t think there is anything in it which would solve his problems!

Fred has managed to get in touch with his son in Australia, and is trying to convince him to try Skype (“if I can do it at my age, why can’t you? What do you mean, there’s a time difference?”) – but meanwhile they are using email.

His son says there is something going on in Australia – with patient control. Have they got a solution for Fred’s problems?

Meanwhile, Fred says, the NHS just hasn’t got it!

Please help me convince him he’s wrong!

[1] the pub landlord thinks the wheelchair is great: ever since he told Fred he would look after the wheelchair if Fred was admitted from the pub but couldn’t commit to bringing it round when he got home again, he has not been admitted from the pub: this might have been helped by fewer free rounds from his mates.

The dog is disgusted: he thought he had Fred properly trained: a walk is a walk – with time to investigate interesting smells and have intelligent conversation with other dogs: since Fred got the wheelchair and became mobile, all his training has gone to pot: he seems to think a walk is a 30 minute sprint at 8 miles per hour without conversations!!


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Who knows what – and why?

Fred is getting a bit concerned about the rather large number of people who seem to know rather a lot about him and his affairs – even if, as far as he can see, they didn’t have any need to know in the first place!

Take the times he gets admitted to hospital: he can see that someone has to tell all the people that visit or help hime at home – the district nurses, the carers, the dog-walker, the day centre, the transport for the day centre (and for any hospital or other appointments), his care-corodinator, anyone who is about to visit such as the community physio, chiropodist, and all the various Specialist Nurses from all the AQPs (whatever they may be) plus – most importantly, the kind people who look after the dog so the poor animal isn’t left home alone – but does the nice young girl who calls around (he’s only spoken to One-Call when he’s got home again) really need to know anything more than the fact he is not at home – or that he will be home again at 6.00 that evening?

Then there are his financial affairs: he appreciates (now that means testing has been explained to him) that if he refuses to discuss his financail affairs, he will be expected to pay for absolutely everything himself: but where does the information go to – and how widely is it shared? (he doesn’t think his pension is any business of the AQPs or even his GP!)

One of his main complaints – and fears – was about the apparent lack of communication between the various medical teams taking care of him – but he really doesn’t want the chiropodist to know all about his medical history: what relevance does his COPD have to care of his remaining foot? (She told him that her mother went to school with his son: how did she know that? It is a small town, but..!)

Last time his GP came to see him, he was talking about QOF (which he had explained when Fred first saw him and all his problems started): Fred wasn’t happy that information about him was going to be uploaded to some central database even though it was going to be absolutely totally anonymised – and this year the GP is worying about the “clinical datasets” the NHS CB is demanding which he thinks will hold Fred’s identifiable data (at this point the GP had to go to the next patient: he knew Fred was  good with IT and suggested he should google it: which he did and isn’t sure he understands it completely: but he isn’t happy).

As Fred says “It’s MY medical record – MY information: I’m happy to share the relevant bits with people looking after me – bot only what they need to know – and there seem to be an awful lot of people who know – or expect to know – far more than I think they need to!”

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Fred’s first app wish-list

Fred still feels that some Apps might be useful – but is getting a bit fed up (already) about the lack of anywhere to go looking – or to get someone else to go looking: when will there be a Medical (or NHS) App Store where he could download what he wants?
He really liked and HandiHealth – but where can he get any output useful to him out of all this enthusiasm?

So he’s started a wish-list – which is likely to get longer the more he thinks about it.
Fred’s criteria.
Apps (or anything else) will only be useful to him if he can use them. (Don’t forget, his hands are so bad that he cannot give his own insulin, but he can handle a remote and type very slowly – it’s the pressure that is the worst problem in self injections.)
So he thinks Apps ought to run on the rather ancient PC he has been lent, as well as on the fancy smart-phones and tablets everyone else seems to have but his hands cannot manage.
Maybe there should be a voice recognition App that would let him talk to all other Apps rather than having to use a touch screen or type?

They ought to be easy to find (NHS App Store?) and have some way he can tell whether they have been tested and given some sort of approval.

Thinking through what he’d like (and ignoring the one-ring master app to rule them all for the moment), he’s identified one that would be really useful (and his Community Matron would like one too): an App where he could have all his medication listed, and when one of the Specialist Nurses came round from yet another AQP and prescribed something new, he could put the new drug in and it would tell him whether this combination was safe, and whether there were any tests that needed to be done when this new medicine was started.
As an addition, if there are interactions and side–effects, Fred would like to know how common they ere – and whether, if he had that side-effect, he would get better when the medication was stopped – or not.
Reading the Patient Information Leaflets led to a long discussion with the Community Matron: I don’t think Fred is unreasonable when he says that every medicine seems to have so many side-effects, interactions and contra-indications that only an idiot would take anything at all!

A second App that Fred thinks might be useful would be one related to local emergency services – especially non-medical ones (he knows the numbers for the surgery, the Community Matron and 999) such as services for dogs (his dog is well covered by social services and the dog-walker – but the lady next door has a dog, a cat and a cockatoo: what hapens if she gets ill in an emergency?) – not to mention plumbers, odd-job men and people who can get you into your house when you’ve locked yourself out.
How about an App that would let you put in the problem e.g. I have a parrot (or tropical fish or other livestock) and have been admitted to hospital: I need to find some service to take care of my pet until I can get home (or have time to make other arrangements) or I need a lock-smith right now – and provide you with a list of local numbers of people supplying whatever emergency service it was that you needed?
And if one already exists, how about an App to locate the Apps that already do the things Fred wants an App for?

And he’d like a place to keep his Apps in his Fredbook – he’s sure he’ll come up with some more ideas soon, and a private App library would be so useful..

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