Posted on February 22, 2010 by Dr Mohammad Al-Ubaydli
The Department of Health issued updated guidance on patient access to health records today. My thanks to Mark Duman, of the Patient Information Forum, for bringing my attention to this. Full details are on our personal health records wiki, but the main are take-homes are clear: the patient is entitled to a copy of their records at any time.
Individuals have a right to apply for access to health information held about them and, in some cases, information held about other people. NHS organisations should ensure they have adequate procedures in place to enable patients to exercise this right.
The following guidance assists NHS organisations in England, through the process of dealing with an access request in accordance with the relevant legislation and any subsequent considerations. This supersedes previous guidance issued by the Department of Health in July 2002 and June 2003 titled ‘Access to Health Records’.
The main legislative measures that give rights of access to health records include:
The Data Protection Act 1998 – rights for living individuals to access their own records. The right can also be exercised by an authorised representative on the individual’s behalf.
The Access to Health Records Act 1990 – rights of access to deceased patient health records by specified persons.
The Medical Reports Act 1988 – right for individuals to have access to reports, relating to themselves, provided by medical practitioners for employment or insurance purposes.
Every day hundreds of thousands of doctors and patients around the world discuss the benefits and risks of drugs. You might think therefore that we know how to communicate the information well, but the European Medicines Agency (EMA) and the Food and Drug Administration agree that we don’t.
Indeed, the EMA logically thinks that before we can communicate well we need to reach an agreed definition on what we mean by benefits and risks and determine the best methodology for measuring and describing them.
Research among 42 assessors of drugs showed that there was no agreed definition of benefits and risks but rather multiple definitions. There was no agreed systematic approach, but there was agreement that it was difficult to define and measure benefits and risks.
Some three million children in Britain are obese, and treating childhood obesity is far from easy. If we are to have any chance of responding adequately to the epidemic of obesity we need to find, firstly, a treatment that works and, secondly, a way to scale it up so that it can be used across the country. Both problems are hard, but the scaling up is, I suggest, the harder problem. I was therefore impressed to encounter an organisation in the backstreets of Southwark that is making real progress with both problems—and already beginning to work not only in Britain but also across the globe.
MEND (Mind, Exercise, Nutrition, Do it!) is a social enterprise that is research driven and has developed a family and community based treatment for childhood obesity. The treatment has been shown in a randomised trail to be published in Obesity next year to reduce waist circumference and body mass index and to increase cardiovascular fitness, physical activity, and self esteem.
The differences between rural and urban China are stark. Beijing, Shanghai, and other major cities are filled with new buildings, best illustrated by those built for the Olympics, whereas rural China has as many as 300 million people living on under a dollar a day, more than any other country. Indeed, China can be described as three countries: a low income country in the West, a middle income country in the middle, and a developed country in the East.
People living in the big cities have access to the latest medical technology, whereas those living in the countryside are served by a “village doctor” (many of them once the famous barefoot doctors) with limited training. So far most health research has been conducted in large hospitals in the cities, but a new programme—the China Rural Health Initiative—plans to build a platform for research in rural areas Last week in Beijing I heard the plans for the initiative.
The China Rural Health Initiative is the flagship programme of the China International Center for Chronic Disease Prevention, which is based at the George Institute China, with Peking University Health Science Center its lead domestic partner. There are also five partners from five of the provinces closest to Beijing, which together have about 190 million inhabitants, and six international partners, including the George Institute in Sydney, Duke University, and Imperial College.
Perhaps I should have realised from the title, but when I began to read The Book of Dead Philosophers I didn’t expect it to be funny. In fact Simon Critchley’s stories of how “190 or so” philosophers died and some of what they said about death is at times hilarious—as well as rich with meaning.
Let’s begin with Freddie Ayer, the Oxford logical positivist whom as a student I saw lecture in Edinburgh. The story of his encounter with Mike Tyson the New York party of an underwear designer is well known, but I’d not heard it. Tyson had begun to assault Naomi Campbell, and Ayer confronted him. “Do you know who the fuck I am?” asked Tyson. “I’m the heavyweight champion of the world.” “And I,” replied Ayer, “am the former Wykeham Professor of Logic. We are both eminent in our fields; I suggest we talk about this like rational men.”
Slowly but surely the internet is transforming industries—finance, travel, music, entertainment—but so far it has had little impact on public services. But can it transform public services and if so how and when? These were the questions that ran through a day of “cocreation” organized by Patient Opinion, an organisation founded by GP Paul Hodgkin that allows patient to share their stories of the NHS with the hope of improving services.
The long term vision of the social entrepreneurs at the day is that the internet can make all public services, including the NHS, police, and local government, more responsive, more bottom up than top down. Patients will not be seen simply as needy recipients of care but people who through sharing their stories and experiences can help others.
Posted on November 11, 2009 by Dr Mohammad Al-Ubaydli
We are getting some nice coverage about the Stelios Award. First to cover is the The Deaf Blog, a blog about the achievements of people with hearing difficulties.
David Molyneaux from Liverpool said that an alien observing earth for the first time would think that it had only three diseases: AIDS, TB, and malaria. He is one of the “three dinosaurs of neglected tropical diseases (NTDs)” who spoke at the meeting, pointing out that sums that are very small by the standards of AIDS could make a huge difference in alleviating the suffering of the world’s poorest people from schistosomiasis, onchocerciasis, sleeping sickness, elephantiasis, and the other neglected tropical diseases. Some of these diseases can be treated very effectively and cheaply. Deworming people—as animals have long been dewormed—for 60 cents a year could make huge differences to child growth and development and levels of disability.
Neglected tropical diseases have received some funds and had successes with treatment and eradication, but why have they not received the attention and funding of AIDS when much more could be achieved with much less money?
Last week I was privileged to hear a brilliant talk—by Nicholas Janni—on what Henry V or rather Shakespeare has to teach us about leadership.
Prince Harry was, as most people know, a dissolute youth, hanging out with drunks, pimps, whores, and undesirables with the great Falstaff chief among them. But when his father, Henry IV, dies he turns away from those scoundrels. “I know thee not, old man,” he tells Falstaff: “Presume not that I’m the thing that I was.”
Once he is king Henry needs a mission, a great cause—and that mission is to conquer France not for wealth or for aggrandisement (although we may be skeptical) but for “honour,” something very important in the 15th century and not well understood in the 21st (except perhaps by the Mafia).
Janni, a coach to chief executives around the world, is keen to promote what the Greeks called “mythos” as opposed to “logos.” We live in a world where logos—business plans, strategies, and accountants—are dominant, and we must rediscover mythos, the world of myth and imagination. “Imagination,” said Einstein, “is more important than knowledge”: it shows us what can not simply what is.” Studying Henry V allows us to enter the world of imagination and inspiration—“Oh for a Muse of fire, that would ascend the brightest heaven of invention.”
Posted on November 7, 2009 by Dr Mohammad Al-Ubaydli
Demos is one of my favorite think tanks, a left-of-center research institution responsible for many of Tony Blair and New Labour’s policies. Peter Bradwell and hiscolleagues are running an interesting research project through a series of focus groups with citizens in different parts of the UK. One of the topics is how personal medical information is shared and I was invited to present to a group in Bradford. The city, along with Nottingham, has the lowest internet usage in the UK so I was curious to hear what they thought. The full slides are on the PHR encyclopedia and the video is below.
There are two things that surprise most Brits when I tell them about electronic medical records. First is that very little information is shared. This is not out of privacy fears, but just because too little information is in computers, and too few are connected to each other. That is why when you go to your doctor they often have no idea what happened at your previous appointment with another doctor. And second is that the UK, or at least England, is one of the most advanced countries in information sharing. It is perhaps as good as it gets in data connectivity at a large scale.
But it is early days, technology is advancing quickly, and technology gives you choices. So the question to the audience was: what choices would they make in sharing information?
Dr Mohammad Al-Ubaydli
Dr Richard Smith
