Opinion: data sharing is a good thing – if it’s done right

I was aware of the NHS proposal and that data would be anonymised. I am quite happy to share my data in this way to help, in any way, improvements in health understanding and care.

OK, we have seen examples of data being handled carelessly but I do not think that should be used to raise fear of contributing to worthwhile causes. Whilst I suppose I’d like, on principle, to keep my health data private I ‘m not sure what harm could come if I was identified. There may, of course, be others with conditions they do not want to share. Anonymity would protect them.

Excuse ME! You couldn’t be more wrong! I want to opt out and I am NOT remotely “selfish”, at all. I know for a fact that some of my health records are not accurate and are based on gross misunderstandings where various “professionals” that I’ve spoken to over the years have gone and wrote down stuff that’s very different from what I told them and it only leads to more outrageous confusion because no-one in supposedly professional positions will listen to me when I’m the only one who knows the real facts about my life and they’ll only believe the word of someone with fancy status who thinks they’re so “vastly superior” and that they know “far better” etc. when in reality they DON’T know any such thing, but they just blindly follow whatever’s in the records or whatever they think is right and totally abuse their power. And the conditions I have forced on me ARE very unique to me and don’t even begin to match anything more widely known and are seriously sensitive and I don’t want every tom, dick and harry knowing, especially not private outfits who have no right to pry into my private matters. Such information should only be disclosed on a strictly need to know basis only and not shared with just anyone and should be properly confirmed and not just blindly misjudged.

Kate Bevan says “ …..because hardly any of us has set foot in a GP surgery for more than 18 months.”. Dr. Hanley says this is not true. He should know as he is directly involved. I have removed the unwarranted thumbs down.

Most GP practices employ an efficient manager to run it. Doctors are usually too busy doing what they are qualified and handsomely paid to do, which is to care for their patients needs, as and when it is deemed necessary.

Dr Hanley doesn’t make it very clear whether he is part of a group practice or whether he goes it alone, the latter inevitably would place a greater burden on him without team support and the Covid-19 would have added to that burden.

In my area, we have a team of practicing GPS who go to great lengths to protect each other from the pandemic, inasmuch as it is quite difficult to get past a receptionist on the other end of the phone to make an appointment to see them. On phoning you will receive an automated message, with several other options of contact before you are considered eligible to visit any one of them.

What I would say to Dr Hanley is; even though I am considered extremely high risk if I contract Covid-19, it is almost 2 years since I actually saw a doctor in person. I receive blood tests every 3 months administered by a phlebotomist which is sent off to the local hospital responsible for my care, which is then analysed and followed up about a week later by a telephone review carried out by a senior research nursing associate.

Dr Hanley’s angry reaction to what appeared to be a valid point was indicative of someone under an enormous amount of stress at this difficult time, but he owes it to himself to take some time out if he can, as his present low mood is bound to be picked up and reflect on his patients in their time of great need.

I think it is impossible to generalise about the number of patients registered at primary care practices that have physically set foot inside the premises and seen a GP face-to-face. No two practices are alike and the needs of patients vary widely across the NHS and throughout the country. I think Kate made a reasonable statement of her impression of the situation for the purposes of her article on the data sharing issue.

I have been to my GP surgery a few times during the Covid-19 epidemic for dressing changes by a nurse. On most occasions I was the only person in the waiting room whereas previously there would usually be several other patients [and their accompanying friends or relatives]. From my experiences I would deduce, as Kate did, that “hardly any of us has set foot in a GP surgery for more than 18 months”.

I recognise that GP’s have been under additional pressure because with the hospitals having had to defer numerous procedures and operations for other illnesses and conditions many patients are requiring intermediate treatment from their GP until the backlog is cleared [and even then waiting lists will be lengthy in many cases].

I endorse Beryl’s comments on Dr Hanley’s reactions. It is indeed likely to be the fact that the patients currently being seen face-to-face by their GP are the more serious and complex cases and therefore the more stressful. Telephone consultations are not without their difficulties either at times and e-mail and postal correspondence must also add to the pressure.

I shall be seeing my GP for a face-to-face consultation in a month’s time and I shall make sure I enquire as to her general well-being and how she is coping with the medical workload as well as looking after her family who have been at home all day. I expect to get a very stoical answer that possibly conceals the true extent of the pressures. I am hoping she has been able to get away for a holiday during the summer.

My apologies for referring to Dr Hanley as ‘he’ if in fact it should be ‘she’, but without a first name either/or was the only means of address.

The GP practice has not been offering appointments at the surgery but a GP will ring that day, to protect the staff and patients. I have used this system twice during the pandemic and it seemed a very sensible approach. If it had been necessary to actually see a GP I presume that arrangements would be made.

I was provided with an email address so that I could send in letter that I had received on discharge from hospital. As a result I was promptly referred to a consultant.

I am very grateful to those working in the NHS and other healthcare roles during these very difficult times.