Sunday, 7 December 2008
It doesn't really need much commentary. Women bringing on their labour early to try and deliver before their health insurance runs out. No Christmas presents for a child with asthma, so that her mother can buy her medication. Awful. Come on all you rich American philanthropists, there's a lot of people in really desperate circumstances on your doorstep. Yes you have Obama ready to step in, but change to your health system is surely going to take some time and there's a lot of people that need your help now.
Thank God for the NHS!
Sunday, 23 November 2008
Here Gordon states that:
- the principals of social action and enterprise should be linked;
- 'free markets' should not mean 'value free markets';
- markets should be underpinned by social purpose;
- due to emerging markets the global economy will inevitably double over the next 20 years;
- there will be massive oppotunities for enterprise and social action due to communication through the Internet, email and other such technologies.
I couldn't agree more. In a time full of 'doom and gloom' I have my eyes completely focused on the future. Yes it will be a changed landscape, but I am full of optimism. Go Gordon!
Thursday, 23 October 2008
Living in the UK, I had actually never heard of the term 'health consumer' until a few years ago when David Rothman suggested that I might want to consider separating MedWorm information into 'consumer health information' and 'professional information'.
I found this 'health consumer' term really quite bizarre, that a patient should be looked upon in such a manner, as some kind of business entity, yet as I came to learn more about the American health system, I understood why.
Over My Med Body! asks us to stop calling patients consumers. Nancy Turret at Edelman's Health Engagement Blog suggests that 'consumer implies consumption'.
For me, the word consumer is related to the word customer and makes me think money. The 'health consumer' buys healthcare, and the healthcare industry is ultimately focused on how to get consumers to buy their products, not how to cure the patient, or as Nancy also highlights, not how to keep the individual healthy.
In the UK the focus is different. The NHS is very much focused on cure, and the government also focusing increasingly on prevention. The words patient and individual come naturally, the term 'health consumer' is strange and uncomfortable.
I am much happier talking about patients and individuals, rather than consumers. However, I hate to say that I see the American 'health consumer' actually becoming even more of a commodity as people are almost encouraged, and often obliged (through inadequate health insurance) to cut out the middle man (the family practitioner for example), to research their own condition and make a self-diagnosis and then purchase their drugs and treatments directly, all online.
I don't imagine that the Internet and Health 2.0 is going to solve the current health care predicament in the US - it will bring about advantages, but at the same time will likely give rise to a new set of problems, and I think the term 'health consumer' will become increasingly appropriate. Of course, you could always drop the term and pretend that patients are not actually consumers, if it makes you feel better, as I think I might.
Saturday, 18 October 2008
Let me tell you another story, in contrast, of a lady who was 18 weeks pregnant when she experienced a slight bleed. She called her local family practice just to make sure that it was nothing to worry about and was invited straight down to the surgery where she was given immediate attention, as a precaution. The doctor listened for a heart beat and could not find one. He showed genuine concern for the lady, although did his best to reassure her that he was not very experienced using the doppler. He called the hospital to see whether she could be given an immediate scan; the hospital told her to come straight away.
At the hospital she was treated with the utmost dignity. Since they did not want to distress the lady by leaving her to wait with the other pregnant ladies, she was taken straight to her own private room. A consultant doctor came almost immediately to give the scan, and at her side was a nurse, holding her hand the whole time to give her support. It was a complete shock for her to be told that there was no heart beat and that the baby had indeed passed away. The lady was given all the space and support that she needed at this emotional time, was brought a cup of tea and was then consulted regarding the options on how best to deliver the baby. After discussing the pros and cons of the different options in as much detail as she wished, she decided to deliver the baby by natural methods with the help of a tablet that would turn off the pregnancy hormones. She was able to decide when would be the best time for her, and when she returned to the hospital later that evening to begin the process again she was treated with great care and sensitivity.
Even though she had to deliver in the labour suite she was given her own private room from start to finish and she was never confronted with having to face any of the other pregnant ladies or babies that had been delivered successfully. She was given the exact same attention as if she had been delivering a live baby, with a midwife to attend to her personally from start to finish and regular visits from the doctors. The midwife was able to answer all of her concerns and helped to mentally prepare the lady for the actual event.
Before the baby was delivered she was consulted as to how exactly she would like the events to proceed, every step of the way, and was given time to hold the baby for as long as she wished. After the process was complete, in her own time, she was consulted on what she would like the hospital to do with the body, and given booklets explaining her options. The lady had a personal point of contact to help her through the process in the coming weeks, which included an autopsy of the baby and genetic testing in accordance with her wishes, as well as liaising with the hospital and undertakers to arrange for a burial in the local cemetery, in an area specially allocated to babies that die in the womb. She was also given aftercare, from a community midwife who called at her house, by the local doctor to ensure that she made a good recovery in the following months, and a visit back to the hospital to discuss everything including the autopsy results with the OBGYN consultant doctor.
The whole event of loosing your unborn child can be psychologically very painful and can carry many of the same risks as delivering a live baby. This hospital did everything it could possibly do to help keep the pain, and risks, to a minimum, and provided follow-up care to ensure a good recovery, and testing to see if there was anything that could be done to prevent a recurrence of the miscarriage in the future. They made what was a very difficult event somewhat easier to bare.
And the cost of the the whole treatment from start to finish, including the autopsy, genetic testing and burial? Well, nothing actually, at least not directly to the lady, since everything was paid for by the NHS.
Friday, 17 October 2008
I know you know this, and honestly the problem is so huge I have no suggestions, other than one major revolution. But just in case you can't see the wood for the trees, thought I'd take the time to remind you guys that there is a lot unnecessary suffering going on over there, probably going to get a lot worse before it gets any better, due to lack of insurance, underinsurance, and problems getting paid even when you do have the right insurance.
The Cover America Tour is a great project that puts some human faces on to all that suffering.
Makes me angry you know, and it's not even my country. If I were you, I think I'd be on the streets shouting. The situation simply isn't acceptable in the developed world. Problem is, the time when it will really matter to you personally, you'll probably be too ill or too weak to make a loud noise about the injustice. How many people in good health, with a job that includes good health insurance, are prepared to make a fuss and vote to pay higher taxes to give better provision to those in less fortunate circumstances?
If you do have a good job, imagine what life will be like if you loose it and your insurance - can happen to anyone, as you are currently well aware. Maybe selfishness with some foresight might lead to a better solution, if consideration for others is not enough? You pay for insurance to protect you against misfortune, yet insurance alone is often not enough when real misfortune strikes - and in those cases you will be dependent on the generosity of society. It is your generosity during a time of strength that will provide you with real insurance the day that you fall. Maybe generosity, consideration for the less fortunate, is something that you would invest in, if you could understand its benefits to you in the future?
Here's a MedWorm news feed for the uninsured.
Wednesday, 8 October 2008
Searchme caught my attention since it appeared a little 'aggressive' in its approach, and I was actually considering putting it on to my blacklist, but fortunately decided to check out their site first - and what a surprise! I know that everyone is constantly looking for the next big thing, an alternative to Google (which of course I will tell you is MedWorm for the medical sector), but not often am I sufficiently impressed enough with a site to really think that it will go far. But this time, I am; I think searchme brings a new approach to the Internet that will indeed go far.
I found it extremely useful in quickly finding out what other sites are doing with MedWorm feeds, and to complile a list of MedWorm recommendations from what people are saying in the blogs. From my search, I was able to create a new 'stack' of MedWorm recommendations from the blogs. Check it out:
Tip: Normally I would never dream of recommending something like this, but I think it worth pointing out, for medical purposes, that if you change in your preferences not to filter content, you do get returned many more results - I tried this since I wanted to be certain that MedWorm content is not appearing on any 'unsavoury' websites (and was relieved to find that it doesn't appear to be), but in doing so I found many more records returned from excellent websites. I guess due to the medical nature of a lot of sites that MedWorm appears on, lots of those sites are thought to possibly contain some adult content.
Monday, 15 September 2008
1. I can never be certain which are genuine or not.
2. I really don't have any money to help these people (every penny I take keeps MedWorm running).
3. I might run into legal problems if I start trying to help people, especially if I give anyone advice.
4. It might break my heart and then I'd be no use to anyone - much better I devote my attention to MedWorm that is likely to be of much greater benefit to all.
Most such pleas I therefore hardly read and send straight to the bin. However, every
now and again one does catch my attention - usually a disjointed rambling that goes into some little detail that leads me to believe that the case is genuine.
I sometimes read these cases to my husband, who like me finds such stories tragic, and somewhere in my heart I offer up a prayer for these people in the hope that it may help them in some small way. My husband always asks me where the person is from, which I can usually tell from the IP address.
And here's the where real shock lies. The accounts I read would be of no surprise coming from a third world country, especially since MedWorm has a truly international audience. However, almost without exception, they come from people living in some of the richest states in America. People without health insurance who can't even afford a visit to a GP, lying in squalor, suffering truly awful afflictions, not knowing where to turn for help.
I see lots of great initiatives in the USA, charities to help develop health care in the third world, doctors that take some time out to work in poor countries abroad - but what about the poor sitting on your own doorstep?
Sunday, 31 August 2008
Thursday, 21 August 2008
My daughter's bunny, 'Niffo', very sadly, and quite tragically, died a few days ago. Tragic because he died of a simply horrible and distressing condition know as 'fly strike' or 'myiasis'. We felt awful since had we known about this condition beforehand we could have taken steps to avoid this happening, but we had never heard of it, despite having done some research into caring for rabbits and it actually being quite common condition in Summer months.
Niffo was so soft and very cute. See here for yourself:
He had become a best friend for my daughter, who he used to follow around the garden. He knew his name and would run to my daughter whenever she called him. He loved affection and gave my daughter all the cuddles she craved whilst her little brother usually succeeded in winning all the adult affection in the house.
If you know anyone with a rabbit, or maybe own one yourself, or are thinking of buying one for your children, then do take some time to check on how to avoid this often fatal condition, which can result in a distressing and almost certainly painful death for any rabbit if it is not caught in the very early stages.
The following information is quite gruesome, but is written here to help inform people and thus maybe avoid some others suffering such a horrible occurrence.
Fly strike happens when a fly lays some eggs either in your rabbit's fur or near to your rabbit in its hutch. They are attracted to damp warm conditions. Any damp uneaten food or dirt from your rabbit, even a small amount, can provide ideal breeding conditions for flies. The eggs quickly hatch into tiny larvae which bury into the rabbits warm fur and into their skin where they feed on your rabbit as they grow into maggots before hatching into flies.
By the time you notice your rabbit is not himself, and then find the disgusting maggots (usually underneath your rabbit where they cannot easily be seen), it is often too late to save them. All maggots need to be removed, which is difficult, especially if they have a lot of fur, since they bury deep into the rabbit skin. The rabbit needs to be bathed well and all maggots need to be removed alive since if they are crushed they release toxins into the rabbit. Any wounds need treating with antiseptic and the rabbit needs an immediate course of antibiotics to treat infection, and should also be treated for shock. Immediate veterinary treatment is required, but unfortunately for many rabbits they do not survive, unless the maggots are removed very early on before they have had time to grow and do much damage.
The condition is obviously very distressing not only for the rabbit but also the owner. My daughter is now suffering horrible maggot dreams as a result, as well has coming to terms the loss of what had become her best friend.
Had we know in advance the high risk in the Summer months of this condition, especially since we have had a lot of rain this Summer and it has been hard to keep the hutch dry at all times, we would have taken precautions with extra cleaning of both hutch and rabbit, checking the rabbit's fur every day, fly repellents and even products Rearguard and Xenex in the Summer months that I hear provide a 10 week protection for the rabbit from this condition.
I had not previously understood the grieving process that a devoted pet owner has to go through when loosing their animal, but I do now. I have previously experienced tears and sadness from loosing a number of small pets such as fish, a budgie I had for 11 years, my sister's guinea pig and a little wild bird we had nearly nursed back to good health, but I had always been a little confused when seeing an extreme reaction from a pet owner who treats the death of a pet as if they had lost someone dear to them in the family, but now I have a better understanding as this event resurfaced the same feelings in myself from other sad losses in the family over the past year.
I also have yet again a renewed sense of just how important it is to get the right information regarding health to the people that need it. So many awful conditions are preventable with the right knowledge, which brings me once again back to MedWorm...
Sunday, 6 July 2008
I'm coming to love this national institution more and more. I don't actually care much whether the UK offers the best health treatment or not in the world - comparison with other health provisions that are essentially private are in my mind unjust. Our NHS system is free for all, and works well most of the time, and for that I am proud and eternally grateful!
Here's a great collection of legacy interviews and documentaries from the BBC regarding health provision (or lack of it) before the NHS, and how it came into existence.
Memorable observations made whilst watching last night's documentary included:
- the ferocity of the fight that the BMA put up to stop the birth of the NHS;
- the courage of the student doctors at that time who supported the NHS and the way that they where shunned and bullied as a result at medical school;
- the strength of character of the health minister, Nye Bevan, who risked everything to see his dream seen through to fruition;
- the nail biting vote by the Royal College of Physicians for their new leader, which was to decide the fate of the NHS, which came down to a difference of just 5 votes at the end;
- the terrible health circumstances of living without the NHS prior to 5th July 1948;
- the thought that costs of the NHS would fall after the initial backlog of treatment requirements had been worked through, which was never going to happen due to ever improving technology that would require an ever increasing amount of funds.
I finished watching the program with a feeling of national pride that I had never really felt before - I am uncomfortable with nationalism, and know that is only by chance that I was born into this country. The birth of the NHS was nothing to do with me, and yet I benefit. But still I am proud.
Regarding the NHS's future, it is my strong belief that this is the one national institution always worth fighting for and defending. It should always remain a free system for all. It needs proper funding and the British people should be prepared to pay for it through their taxes. I would be more than happy to pay higher taxes as long as I knew that this tax was going to fund the NHS. I would even be happy with a separate tax that was dedicated to health. I also believe that the government should look to significantly increase spending in medical research. The only way to really keep down the ever increasing costs of drugs and other medical technologies is to invest in their research in the first place. Get a stake in their creation and that way claim some power back from greedy pharmaceutical companies.
Thursday, 31 January 2008
I now often hear Hugh Grant's protest at the back of my mind as he tries to argue the case that he is an island (which he comes to realise during the course of the story that he could not actually continue to be), and also the dialog from the young boy in the film as he comes to the conclusion that one parent is not enough - you need backup (his point not being that you need two parents, but in fact a whole network of people to give you the support you need if you are to be happy in life).
I am by nature an extremely independent person, always someone to try and work something out myself before asking for help – in fact, I could probably count the number of times I have asked for help in this life, and each time it was a difficult thing to do. I'm the type that will always look to the map rather than ask for directions and finds it incredibly difficult to admit when I don't know something, much preferring to quickly dig deep into a manual somewhere to find the answer myself. I guess I am also a bit of a perfectionist and probably am reluctant to delegate a job, especially when I think I can do better myself. And because of these traits, I guess I also could easily fall into the trap of arguing that I too, and my work, is an island - I don't need anyone else because I can do it all on my own - in fact, other people would probably slow me down.
Add to this character another trait that is fiercely competitive. If anyone has the same ideas as me, does something similar, or worse still, better, I can't help but fume inside - something close to hate, or envy, maybe some feeling of inadequacy - I simply have to be the best, or at least hold within me the belief that I am the best, or else remain ignorant of the reality of the situation - maybe that is why I sometimes don't like to look at competitor sites, for fear that they might be better than mine!
But all these sentiments are strictly not Health or Medicine 2.0
Health 2.0 in my mind is all about forming relationships in order to build a framework that might release the full power of the internet (3.0!) and take us that step closer towards the healthy utopia of which we all dream. This takes some courage when many entrepreneurs are often by nature both independent and competitive. It means opening up a little, sharing ideas, looking at building partnerships and new ways of working with other people and other websites, some of whom may be considered potential competitors and others that you may never have considered as relevant to what you are doing at all. Any websites that follow this ethos I believe will grow - those that hang on to their NDA's (non-disclosure agreements) as some kind of armour in an attempt to keep their company ideas under lock and key I do think will likely wither over time and die. Sure there has to be a little balance - I'm not talking about broadcasting your 5 year business plan to the world - but I am talking about throwing a little caution to the wind and saying 'what the heck - maybe this other person/website might be competing with me somehow somewhere in the future? (especially since we all have similar ideas about what we should be building – honestly, there really isn’t much in the way of original ideas), but if we can find some way of helping each other out, chances are we can actually help each other get to where we want to be a little faster, and build something much more powerful than we originally thought'.
Think about relationships with other websites, and relationships with your site visitors - who may not always be who you think they are - think relationships both vertically and horizontally - near and far - outside the box - functional and philosophical. Remember that the Internet is a web and I think you'll be keeping on the right track.
Thursday, 24 January 2008
I used to be cool once - in a younger life I owned a 'way cool' clothes shop. I was the ultimate trend setter. I took pride in spotting trends way ahead of their time. The downside of this was that as soon as something became mainstream, I would hate it - which meant I was never going to earn my fortune in the fashion industry. Now my daughter tells me I am 'past it'. I'm not, honest! (I'm trying to convince her that I am even cooler - I just don't care any more!)
Now David is a cool geek - he saw the phrase "Health 2.0" coming way before the rest of us - and now everyone is using it he has to hate it. This dislike I think started back when he first added the category 'Web 2.0' to LibWorm over a year ago, and has been simmering ever since, until it reached boiling point a few weeks ago.
Hey David - you know I'm only pulling your leg ;)
Now, in order to make amends for my tomfoolery David, please let me agree with you. I think that the term "Health 2.0" is not helpful for medical librarians or other information specialists when trying to promote the use of internet technologies amongst physicians and other medical professionals.
The majority of doctors do not care and simply could not care less about "Health 2.0 ".
They may be interested to know how the Internet can be of use to them in their work, but mention "Health 2.0" to them and generally the response you are going to get is Health What??? followed by very rapidly increasing disinterest (trust me, I've tried it, on my nearest and dearest!)
My understanding is that the majority of doctors also have not heard of and do not care to hear about mashups, aggregators, folksonomies, AJAX, widgets, the semantic web, RIAs, or for that matter, 'Really Simple Syndication'. They want to know where to click to get to the information they need, quickly, and that's about it! I know there are exceptions to this rule - in fact, there is quite a big group of technically savvy doctors out there - but in terms of world wide health care professionals, this big group is really tiny and in no way representative of the majority. When talking to my target users on a daily basis about MedWorm, I often drop the term 'RSS', since it usually isn't necessary, and I find that 'newsfeed' works better.
But I do think, as much as it annoys me also, that the term 'Health 2.0' has its uses:
1. It helps money makers to exploit the health internet business as much as possible by whipping up frenzied interest from venture capitalists.
2. It gives previously disheartened American citizens some hope that there may be some solution to the disjointed health care provision in the US (hee hee! now I may complain about the NHS and its failings, but it is with some pride that I hold on to this national institution!).
3. It brings me more visitors to my blog - which is great for MedWorm.
4. (The only use that I believe is honest in its application.) It helps me, and I am sure others, conceptualise what has happened/is happening/will happen in regards to communicating and sharing (health and medicine) information on the internet, and helps bring like-minded individuals sharing this same interest (and excitement) together, to discuss how we can push ahead with such progress.
Let me elaborate point 4 a little further, for it is the reason why I can continue to justify my blog dedicated to this topic.
Sure we all know that in real terms there is no second version of the Internet. But thinking about 2.0 helps me to stand back and see the wood for the trees. I started MedWorm really by chance - probably jumping from one lily pad, to another that was bigger and greener, to another and another, until I found one that suited me just fine - the biggest and greenest in the pond - my destination - how nice! But I hadn't really stood back and looked at the pond as a whole, to see what else was growing there - I hadn't really given a thought to its ecology and how we all depended on each other for our future growth and success.
An example of my ignorance at that time was when David suggested that I might think about inviting people to give their comments and suggestions about MedWorm, and possibly writing a blog. My immediate reaction was that I was just too deep in code to have time for such activities. I've come some way since then! Not only do I love to hear about what people have to say about MedWorm and get feedback (and more), I realise that MedWorm's growth absolutely depends on such relationships, both with its users and with other compatible websites.
Thinking about Health 2.0 and the coming Health 3.0 (sorry David! and yes the dreaded 3.0 posting is coming!) has made me realise that not only is investment in communication with both users and what could actually be seen as competitors, both enjoyable and helpful, it is actually MedWorm's destiny - and I can run ahead with it, or fall by the wayside and let MedWorm slowly die.
So to summarise my opinion on the term "Health 2.0" - do I love it or hate it?
1. It annoys me, because I am cool like David - honest!
2. It helps me conceptualise health developments on the Internet and form my plans for the future.
3. It helps bring together like-minded people to discuss such developments.
4. It does not help when trying to encourage the majority of physicians and other health professionals to try out MedWorm and other emerging Internet technologies.
I guess therefore that I am 50/50 - some may say sitting on the fence!
And what about you? Health 2.0 - do you love it or hate it?
Saturday, 12 January 2008
- Health 2.0/Medicine 2.o
- The Internet
If you are, please drop me a line - I'd love share ideas with you!
If you are reading this and are a physician, probably you are one of a minority. You take a keen interest in IT. You like reading medical blogs and maybe you have one of your own. You probably know a bit about RSS and are even familiar with Health 2.0.
Do you realise that if you are one of these unique people, you have a responsibility to share the good news of the coming Health 2.0 revolution with your colleagues, who may not be so technologically inclined? Without your encouragement, it will never really happen. You are bridges. You are champions!
There are many people excited about Health 2.0, but I increasingly find myself asking the question: How many of us enthusiastic people are really 'in' medicine, and how many of us are just technology medical wannabes like me? I'm an IT professional that would love to be able to cure the sick, but sadly can't, so spend my days dreaming up and building an infrastructure to help medical professionals, but the problem is this big gulf between IT and medicine. How to make that leap? How to convince my husband that RSS really is the best thing since sliced bread?
If you are really 'in' medicine or medical research, and have an interest in Health 2.0, please get in touch. Maybe we can work together to convert the masses? Maybe you might even me interested in becoming a MedWorm Associate?
Health 2.0 is all about finding new ways of working together, so drop me a line and build another link in the big brain.