Stuff that occurs to me

All of my 'how to' posts are tagged here. The most popular posts are about blocking and private accounts on Twitter, also the science communication jobs list. None of the science or medical information I might post to this blog should be taken as medical advice (I'm not medically trained).

Think of this blog as a sort of nursery for my half-baked ideas hence 'stuff that occurs to me'.

Contact: @JoBrodie Email: jo DOT brodie AT gmail DOT com

Science in London: The 2018/19 scientific society talks in London blog post

Monday, 23 March 2020

Coronavirus: extra Gov UK support for extremely vulnerable people in England

This https://www.gov.uk/coronavirus-extremely-vulnerable is the UK Gov's link to request extra help for anyone who is extremely vulnerable(1) because they have very serious underlying health conditions that put them at even greater risk from coronavirus complications. It includes people with severe asthma, cystic fibrosis, or people undergoing cancer treatment or who have received a transplanted organ etc. At the bottom of the page it links to information for people in Northern Ireland, Scotland and Wales.

The form will let them register (or you can register on someone else's behalf) to get help for essential supplies like food. It also says "If you're not sure whether your medical condition makes you vulnerable, register anyway."

I think this group is meant to be getting letters from GPs' surgeries this week and I suppose this is a sort of 'belts and braces' approach to ensure no-one is missed.

Here is the UK Gov's one-page overview of all "Coronavirus - what you need to do" information https://www.gov.uk/coronavirus

(1) This link covers what I think is meant by *extremely vulnerable* . ("Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others.")

This document doesn't seem to be available in other languages yet but if it becomes so I think they'd live here.

(2) This link covers is what I think is meant by *vulnerable*- ie people who have underlying health conditions such as asthma, diabetes, heart disease, high blood pressure etc (but see the bit in my 2nd paragraph above about "If you're not sure...") as there are levels of severity. These are the people advised to be the 'most stringent' in observing social distancing measures.

It's also available in other languages.

Please note that I'm not medically trained, this is just general information about where to find public advice on the Government's website(s) about staying healthy and getting additional support :)




Sunday, 15 March 2020

Free cheering or inspiring films to watch online from the Internet Archive - options for isolation during Coronavirus

The Internet Archive has lots of films and programmes. Some of them perhaps shouldn't be there (not out of copyright) so I wouldn't normally draw much attention to them, but... it's all a bit unprecedented at the moment. I've picked things that I mostly discovered through watching with my parents.

Films are added by people and they either give useful tags or not so searching by genre isn't always that helpful, it's all very much pot luck. Also, there doesn't seem to be an obvious filter and there is random pornographic material there - search at your peril :-) https://archive.org/search.php?query=

The quality might be a bit variable and some of them can take a while to buffer (I'm on nearly 60mbps and Blazing Saddles kept stopping and starting). You can also make the film go full screen on a laptop.

I've checked the first few minutes of these to see that they seem to be what they say they are but as always watch at your own risk! 

The Ten Commandments (1923)
Cecil B De Mille's epic which entered public domain (copyright free) in the US in 2019.
https://archive.org/details/ptp_the-ten-commandments_cecil-b-demille_blu-ray_x264_mkv_720p_180770

Oliver Twist (1933)
A delicious Sunday-afternoon-ish black and white film with pleasing audio hiss.
https://archive.org/details/oliver_twist

Yes Minister - complete series
Peerless. I hadn't realised that the very first episode had a different theme tune, pick the 2nd episode if you are looking for comforting familiarity. I've not been through all the episodes to check but it looks like it's the complete series.
https://archive.org/details/WishYouWereHere2/1x01+-+Open+Government.avi
(a list of all episodes is beneath the link)
https://archive.org/details/WishYouWereHere2/1x02+-+The+Official+Visit.avi  <- br="" familiar="" theme="" tune="">

In Which We Serve (1942)
https://archive.org/details/In_Which_We_Serve

Passport to Pimlico (1949)
https://archive.org/details/PassportToPimlico1949 

Kind Hearts and Coronets (1949)
https://archive.org/details/KindHeartsAndCoronets1949

The Lavender Hill Mob (1951)
https://archive.org/details/TheLavenderHillMob1951

Hobson's Choice (1954)
Charles Laughton and John Mills.
https://archive.org/details/HobsonsChoiceZo

Tom & Jerry cartoons
Quality varies
https://archive.org/search.php?query=tom%20and%20jerry
This one is good (quality of recording), and this one

Bugs Bunny - complete set of cartoons
https://archive.org/details/CompleteBugsBunny/001+-+A+Wild+Hare.mp4 

The Ladykillers (1955)
Peter Sellers, Herbert Lom - wonderful
https://archive.org/details/TheLadykillers1955

School for Scoundrels (1959)
Alistair Sim, Ian Carmichael and Terry Thomas
https://archive.org/details/SchoolForScoundrels1959

I'm All Right Jack (1960)
Lovely comedy with Ian Carmichael and Peter Sellers
https://archive.org/details/ImAllRightJack1960 

Blazing Saddles (1974)
Needs no introduction :)
https://archive.org/details/RecordedMoviesfromTV497/Blazing+Saddles.mp4 - I found it hard to get it to stop buffering, so it may need to play for a bit to 'spool' then rewind to watch it and let it carry on downloading in the background.

The Dish (2000)
Utterly delightful comedy from Australia, celebrating the role of one of their massive radiotelescopes in receiving the signals from the 1969 Moon landing. I've screened this film at an open air screening in Blackheath and it was magic.
https://archive.org/details/TheDish2000




Wednesday, 4 March 2020

Finding patients to take part in your smaller-scale research projects

Since I stopped working at Diabetes UK (2012, Science Info team made redundant, bygones) I have largely been out of the loop on both large-scale clinical trials and smaller-scale patient involvement with research.

There's quite an infrastructure in place for larger scale trials with clinics being recruited as enrolment centres and so on, with a readymade stream of eligible patients who can be invited to take part (they can of course say no!). There is also a variety of brokering-type arrangements where people interested in taking part in clinical trials can register with organisations and hear about trials taking place.

For smaller projects - often as part of a university course (masters / PhD) or even a funded project with a patient involvement component it can be a little harder to find patients.

Here are some suggestions on finding suitable participants
  • Probably you'd need to cultivate 'gatekeepers' (community leaders, or people who are in contact with your chosen 'quarry') given that people with a given health condition are more widespread. At Diabetes UK we reached people with diabetes directly and indirectly - directly through our website and social sites (and them just getting in touch) but a hugely important route was via nurses and doctors who'd pass on our leaflets to them. This is also very useful for people who are less comfortable using online options - so GPs' / nurses surgeries and clinics are also a good place to ask, and may have a notice board (ask before pinning stuff up!)
  • Contact the relevant patient charities and support groups (eg if you wanted 'heart patients' an obvious place to start would be the BHF, but also diabetes is a cardiovascular disease so diabetes charities also relevant). These charities often have voluntary groups which get together and raise funds and in doing so support one another, share information and have talks from researchers (you, perhaps)
  • Have a look at research literature on similar topics and see what avenues were fruitless / fruitful. I worked on a project looking at medical device safety and colleagues worked hard to find 'people with high blood pressure' or 'people with diabetes' to take part in workshops looking at how new devices are developed - the actual device bit was fairly straightforward in comparison!
  • Different universities have different arrangements with people 'outside' of the university (eg schools talks programmes or widening participation liaison, public lectures for adults, other public engagement activities and so on) so staff outside your department might be a useful starting point. Some unis will have a Patient and Public Involvement liaison person, or the Public Engagement team might cover this function.
  • Some unis send round opportunities for staff to get involved in staff-run research / trials, ask if you can use that to ask staff to invite non-staff friends to get in touch.
  • The CHAIN network (Contact, Help, Adviceand Information Network) can put you in touch with people working in health and social care, though not patients directly (again, gatekeepers).
  • NIHR Involve supports public involvement in NHS, public health and social care research. There are also specialty groups (Eg cancer, diabetes etc) https://www.nihr.ac.uk/explore-nihr/specialties/
  • In the wider community think about where else community noticeboards can be found - gyms, newsagents, supermarkets, libraries, town halls, community centres, faith groups etc.
  • Community groups - these might have nothing to do with any particular health condition but cater for kids or older adults - eg Good Gym, the Shed thing for over 50s men, women's institute, film clubs, Nextdoor etc.
  • Schools - they have children, parents and teachers some of whom might have the condition. Again another potential source of community bulletin boards!
  • Online bulletin boards - Mumsnet etc. Also groups on Facebook and 'communities of practice' around hashtags on Twitter / Instagram.
  • Write a blog post or article about your project's aims (or perhaps a series of posts) and share that link periodically on Facebook and Twitter with relevant hashtags. For Instagram use a bitly link as links aren't clickable (unless put in bio) so people will have to type in, you can also use this to see how many people are visiting the bitly link (metrics!).





Dr Jayne Donegan - GP and homeopath talk on vaccination in Galway, 25 March 2020

Dr Jayne Donegan (a GP and homeopath) has been in the news recently (in November 2019 and again in February 2020) after undercover reporting by Times journalists found that she was giving harmful advice about vaccination to parents at her public talks. She has advised parents not to vaccinate their children, and also how to falsify their child's vaccination records.

She is due to give another talk in Galway on 25th March and I've contacted the venue and Eventbrite ticketing to ask them to consider cancelling it.

November 2019
Antivax GP shows parents how to avoid jabs The Times - Saturday 16 November 2019
Parents pay £15 for antivax talk on health ‘propaganda’ The Times - Saturday 16 November 2019
The Times view on Jayne Donegan: Dangerous Talk The Times - Saturday 16 November 2019
No British doctor should be advising parents on how to avoid the MMR vaccine

Because of her antivaccination pronouncements and reckless advice she is currently under investigation by the GMC (General Medical Council) which placed her GP-registration under interim conditions in early January 2020, reported in The Times (see below). She is not allowed to offer advice on vaccinations (condition 4: "She must not prescribe, administer, advise upon or have primary responsibility for childhood vaccinations").

January 2020
Antivax GP at risk of being struck off The Times - Wednesday 8 January 2020
(I couldn't find a copy available online but the relevant quote is "Last night the General Medical Council said it had begun an investigation into Dr Donegan, a freelance GP in London, and placed her under interim conditions to limit her practice. If the GMC finds against her, she could be struck off the medical register. The GMC would not comment while the investigation was under way.")

In February 2020 she gave another talk about vaccination to parents in Wexford and this too was attended by an undercover reporter who found that she was continuing to give confusing information.

February 2020
Anti-vaccine doctor Jayne Donegan says World Health Organisation uses ‘Nazi techniques’ The Times - Friday 21 February 2020
I don’t give advice at talks, claims anti-vax doctor The Times - Saturday 22 February 2020
Jayne Donegan told Irish parent to give her child ‘fresh air’

March 2020
Dr Donegan has another event due to take place in Galway on 25th March 2020. The ticket page (Eventbrite) had the address as the Loughrea Hotel & Spa and on 26 Feb I wrote to them with an outline of this blog post outlining the contentious nature of her talks and asking if it was definitely going ahead. I didn't hear back but spotted a day later that the Eventbrite page no longer named the hotel but instead said 'TBC' for the venue. Apparently the post code is the same though, and the text of the information highlights that material will be on sale for cash only and that "The closest ATM is in Supervalue a 5 minute walk from the hotel". So nnperhaps the venue is unchanged and it's just that the public nature of that information has been withdrawn.

I also wrote to Eventbrite (27 Feb) with the information in this post and asked them to consider removing the listing but have not heard back and the Eventbrite page is still up and listing ticket buying options.

Above: screenshot taken on 27 Feb showing a different event organiser and name of venue compared with the screenshot taken on 28 Feb (below).


The reasons I think the event shouldn't go ahead
It's concerning that anyone is promoting an anti-vaccination stance to parents, or suggesting that homeopathy (aka 'homeoprophylaxis') could be used as an alternative (leaving children unprotected), or giving advice on how to tweak a child's vaccination records so that it looks as if they've been vaccinated.

It's additionally concerning that a GP is offering this information and while her views are her own (even if I disagree with them) her promotion of them is surely incompatible with GMC registration. It's bad enough that homeopaths are coming out with this nonsense but being a GP may lend legitimacy.

Although I don't have a great deal of sympathy for her (as she persistently repeats the same actions that have got her noticed by newspapers and the GMC) I think the event organisers are also putting her (and her continued GMC registration) at risk by giving her another opportunity to say these things publicly, again.

It's fairly likely that the event will go ahead and despite the event organiser's precautions* I'd be amazed if at least one person attending wasn't there to report on it critically.


*requiring the names of everyone attending presumably to weed out known scientists, doctors, skeptic activists and journalists ;)