Mohammad Al-Ubaydli’s blog

Bar code medication administration

Posted in Medicine, Technology by Dr Mohammad Al-Ubaydli on October 20, 2009

I am a big fan of bar code medication administration. It can save more lives for less money than most other, sexier, health care investments can. Of course, like all technologies, it is not perfect. For example, I have written about BMCA workarounds in the past, i.e. where staff distrust the technology and start bypassing it in their workflow.

But Alan Barrell passed on this video to me and it is a pleasure to watch because the clinicians are so enthusiastic about the patient safety aspect of using technology:

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Genomic electronic health records: opportunities and challenges

Posted in Articles, Medicine, My publications, Society, Technology by Dr Mohammad Al-Ubaydli on July 22, 2009

This article was originally published in Genome Medicine on 23rd July 2009 at http://genomemedicine.com/content/1/7/73/.

Mohammad Al-Ubaydli1 email and Rob Navarro2

1UCL Centre for Health Informatics and Multiprofessional Education, Archway Campus, Highgate Hill, London N19 5LW, UK

2Sapior, 16 Byron Avenue, London E18 2HQ, UK

author email corresponding author email

Genome Med 2009, 1:73doi:10.1186/gm73

The electronic version of this article is the complete one and can be found online at: http://genomemedicine.com/content/1/7/73

Published: 22  July  2009

© 2009 BioMed Central Ltd

Abstract

There is value to patients, clinicians and researchers from having a single electronic health record data standard that allows an integrated view, including genotype and phenotype data. However, it is important that this integrated view of the data is not created through a single database because privacy breaches increase with the number of users, and such breaches are more likely with a single data warehouse. Furthermore, a single user interface should be avoided because each end user requires a different user interface. Finally, data sharing must be controlled by the patient, not the other end users of the data. A preferable alternative is a federated architecture, which allows data to be stored in multiple institutions and shared on a need-to-know basis. The data sharing raises questions of ownership and stewardship that require social and political answers, as well as consideration of the clinical and scientific benefits.

In the May issue of Genome Medicine, Belmont and McGuire [1] make the case for a ‘uniform electronic health record’ (EHR) that includes both genotype and phenotype information. By uniform they mean a single data standard across different EHR databases and user interfaces, rather than a single database or a single user interface (this has been confirmed by personal communication with the authors).

It is certainly true that a clearer picture of a patient’s health is possible when their genotype data are combined with phenotype data. The quantity and quality of these data are improving, along with the analytical tools that allow us to interpret them. Patients, clinicians and researchers can all benefit from a better understanding of these data, and Belmont and McGuire’s article [1] describes efforts in Europe and the USA to unify the datasets.

However, other parties that would benefit from better understanding include public health officials, government bureaucrats, insurance companies and employers. And in some cases, there are conflicts of interest; for example, an insurance company could use genetic information to raise premiums or deny cover, whereas a patient might use the same information to seek increased cover when they learn of the risk for future diseases.

There are ways to solve the conflicts of interest that can arise from the use and availability of patient data. First, as Belmont and McGuire [1] describe, efforts such as the Personal Genome Project [2] allow patients to opt in to fully disclose their genetic information for the benefit of researchers. PatientsLikeMe.com [3] has an openness policy alongside their privacy policy so that participants can agree to share all their data, and tens of thousands of people from around the world have already agreed to do so. The value to researchers is currently limited because the data are self-submitted rather than independently verified, but the proof that patients are willing to share their personal information is there.

The principle must still stand, however, that data sharing begins with and is controlled by the patient. This favors a single personal health record (PHR) as a database rather than a single electronic health record. PHRs are records owned and controlled by the patient [4] , as opposed to EHRs, which are owned and controlled by health care practitioners.

Useful data standards for PHR and EHR communication should be expanded to fit the genomic vision that Belmont and McGuire [1] outline. In particular, the Continuity of Care Record (CCR) data format is the digital equivalent of a referral letter from one clinician to another about a patient [5] . It is supported by PHR providers such as Google Health and Microsoft HealthVault; pharmacies such as Walgreens and CVS; and providers such as MinuteClinic [6] . The Department of Health and Human Services at the National Cancer Institute unveiled a standard earlier this year for family history [7] . However, a single genomic data standard is not yet available or widely adopted.

Second, de-identification algorithms that work for genotype data are needed. De-identification is a better term than anonymization because the latter implies a binary process, which is misleading, while the former accurately conveys a spectrum. We know that de-identification algorithms are already in use when the public interest demands phenotype sharing but patient consent is not possible or practicable. Examples include notifiable disease surveillance, public health planning and large-scale research. In these cases, looking after the patient’s privacy requires measures that ensure they cannot be identified through illicit use of those data. But de-identification algorithms for genotype data are not mature enough.

Re-identification becomes more likely as the number of users increases. Illicit patient re-identification has three sources of risk: the research team, all other people who have access to these data and finally the inherent readability of the data itself [8] . Building a single system to be accessed by hundreds or thousands of researchers across tens or hundreds of projects is simply inconsistent with minimizing these three sources of risk. Such systems can therefore never be adequately private.

What might work, when public interest demands but consent is not possible, are schemes that separately copy just the minimum of phenotype and genotype data from various health management systems for a specific group of vetted researchers working within a highly protective legal context. Any change in project purpose would necessitate a re-assessment of the prevailing risks. A system in which highly vetted organizations were permitted to collect and link minimal data from all its various sources would be ideal.

In addition, the architecture for a single EHR or PHR is not a simple one. It is desirable and correct to view all the relevant data at the time of making a clinical decision or coming to a research conclusion. However, that does not mean all the data should be viewable.

For the person viewing the data, their storage in a single place does mean faster access and allows data normalization. But for the people whose data are viewed, such a data warehouse is ripe for abuse. Citizens have expressed their distrust of such systems on many occasions [9] , and security experts have repeatedly pointed out the risks of data warehouses [10] . Federated architectures, where data are spread across multiple sites and queried as needed, have been deployed [11] and are made easier by new approaches, such as service-oriented architecture. And knowing how much protection to put in place is made easier by couching privacy concerns in terms of the risk of illicit patient re-identification.

Conclusions

All of the above discussion is not to say that a single EHR is a bad idea. Belmont and McGuire [1] make a good case for the need to unify data in the service of laudable aims, including providing good patient care and advancing medical research. However, just because something can be done does not mean that it should be done, and in health care it is patients who should decide what should be done. They will be the most affected by privacy breaches, so they must be the ones who decide which of the benefits to take advantage of. The danger is when professionals confuse their convenience with the benefit of patients. The good news is that mature technologies exist that do put patients in control. As professionals we need to earn their trust by using these technologies when we ask for data sharing that makes our jobs easier.

Abbreviations

EHR: electronic health record; PHR: personal health record.

Competing interests

MA is the CEO of Patients Know Best, a company that makes and sells personal health record software. RN is the CEO of Sapior, a company that makes and sells de-identification software for the private sharing of health data.

Authors’ contributions

MA wrote the sections on personal health records and RN wrote those on de-identification.

References

  1. Belmont J, McGuire A The futility of genomic counseling: essential role of electronic health records.

    Genome Med 2009, 1:48. PubMed Abstract | BioMed Central Full Text | PubMed Central Full Text OpenURL

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  2. Personal Genome Project [http://www.personalgenomes.org/]

    OpenURL

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  3. PatientsLikeMe [http://www.patientslikeme.com/]

    OpenURL

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  4. Markle Foundation: Connecting for Health [http://www.connectingforhealth.org/resources/final_phwg_report1.pdf]

    OpenURL

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  5. Continuity of Care Record Standard [http://www.ccrstandard.com]

    OpenURL

    // Return to text

  6. Medpedia: Continuity of Care Record (CCR) Standard [http://wiki.medpedia.com/Continuity_of_Care_Record_(CCR)_ Standard]

    OpenURL

    // Return to text

  7. Cancer Biomedical Informatics Grid [https://gforge.nci.nih.gov/projects/fhh]

    OpenURL

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  8. Navarro R An ethical framework for sharing patient data without consent.

    Inform Prim Care 2008, 16:257-262. PubMed Abstract | Publisher Full Text OpenURL

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  9. McKie Robin Icelandic DNA project hit by privacy storm. [http://observer.guardian.co.uk/international/story/0,6903,1217842,00.html]

    The Observer 2004. OpenURL

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  10. Anderson R, Brown I, Dowty T, Inglesant P, Heath W, Sasse A: [http://www.cl.cam.ac.uk/~rja14/Papers/database-state.pdf]

    Database State.York: Joseph Rowntree Reform Trust; 2009. OpenURL

    // Return to text

  11. Gruman G Massachusetts takes a spoonful of SOA. [http://www.infoworld.com/d/architecture/massachusetts-takes-spoonful-soa-904]

    InfoWorld 2005. OpenURL

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A short history of short messages: What technology means for Iran

Posted in Arabs and Arabic, Politics, Society, Technology by Dr Mohammad Al-Ubaydli on June 16, 2009

The Iranian revolution of 2009 is being co-ordinated through an American company called Twitter. Their web site, www.twitter.com, allows people to send short messages, each no longer than 140 characters. These messages are shared with everyone in the world, available for anyone to read.

At the moment, a lot of people are interested in whether or not the Iranian elections were rigged, and what to do about it. And a lot of these people agreed, through short messages on Twitter, that someone did cheat and that everyone should gather in Tehran to protest.

This is not the first time that short messages had big consequences. In 2001 many Filipino citizens were angry over the corruption allegations about President Joseph Estrada. When the impeachment trial’s Senators refused to look at crucial evidence, the voters got angry. A simple mobile phone SMS message was sent and forwarded from one citizen to another: “Go 2EDSA. Wear black”. In four days, one million people gathered in the EDSA square. President Joseph Estrada resigned.

Twitter allows even more efficient co-ordination through short messages and police in the Middle East understand this. Egypt’s Alaa Abd El Fattah, an Egyptian programmer, democracy activist and blogger, knew that the police were following his profile on Twitter when they came to arrest him. As one police officer approached, Abd El Fattah sent out a message about the approach but also saying that he had many friends close by and that they would protect him. This was not true, but the police responded as he thought they would: they sent so many police cars for the arrest that they blockaded the first police car. And by that point a large crowd of citizens gathered. He did have friends after all.

Myanmar and China heeded the risks. In 2007 Myanmar’s government shut down all access to the Internet and all mobile phone networks. Photographs and reports gradually leaked out about the regime’s crimes, but the ability of the protesters to co-ordinate their efforts was hampered. Last week, on the 20th anniversary of the Tienanmen Square massacre, the Chinese government temporarily switched off access to sites like Twitter.

But herein lies the dictator’s dilemma. “Switching off the Internet is a double-edged sword,” said Bahraini Professor Omar Al-Ubaydli*, an economist specializing in political economy. In today’s world switching off access also means switching off the economy. Countries like Myanmar can tolerate this as their economy is so primitive, but China’s cannot do so indefinitely. And for any government in the Middle East that is pretending to be democratic, switching off access uncovers their pretenses.

Which brings us to the short messages of Twitter. Stop pretending. Step aside. Power to the people.

* Yes, that’s my brother. Isn’t he cool!

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The five ‘Why’s

Posted in Books, Entrepreneurship, Patients Know Best, Society by Dr Mohammad Al-Ubaydli on May 25, 2009

Eric Ries’s description of the five ‘why’s has been playing on my mind recently as I figure out how to apply it in my company. Briefly, mistakes happen to everyone all the time, but the difference is how you respond to them. In particular, if you ask Why five times you have a much better chance at understanding the true cause of a problem and thus solving it.

The press do this too little and as citizens we suffer from this lack of questioning. Take the tragic story from May 12th of a roof collapsing on students while they were doing an exam. The link is to Google’s indexing of coverage for the story. Sadly, most of the articles focus on showing the “devastation inside exam horror hall”.

It is only on the excellent Teachers TV that I saw a follow-up to the story. As a side note, this is a wonderful channel that I am becoming hooked on. The technical director for the founding team is Dawson King, who is now our chief technology offier.

The channel gets much further than the newspapers did on the day just by asking Why once. In the seventh minute of this video they mention that an inquiry had found that the heating duct “fell because the wires attaching it to the roof broke”. This is not really informative. Just to translate, something (the duct) fell because what used to stop it from falling (the wires) stopped stopping it. In general, it is reasonable to assume the same to be true for any story of part of a building falling.

Asking Why four more times would get you much further. Why did the wire break? Because it was frayed, the answer might come back – I am guessing here and do not know any more facts than the ones I saw in the news story. Why was it frayed? Because it was old. Why was it old? Because the school’s maintenance budget has been underfunded for the last five years. Why was it underfunded? The answer to this will be an interesting one.

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O’Cracy: D.E.M., died 26/06/1976

Posted in Books, History, Society by Dr Mohammad Al-Ubaydli on April 10, 2009

Here is another story from Indira Gandhi’s emergency rule in India. It is only in the last couple of months that I have been learning about this period in India’s history and this quotation is also from Rafiq Dossani’s India Arriving.

The Emergency marked both the low point of press freedom and a turning point. With the exception of the Statesman and the Indian Express, the English-language press scraped and groveled to accommodate the state during the Emergency. Even the former had to be very careful to escape the censor’s eye. In what are now iconic tales of defiance, the Indian Express got away with the following message in its obituary section in 1976: “O’Cracy: D.E.M. O’Cracy, beloved husband of T. Ruth, Father of L. I. Berty, father of Faith, Hope and Justice, on June 26.”[1] And a library in Calcutta issued a notice in the Statesman in December 1975, stating: “On and from 1st January 1976, newspapers will be found in the fiction section.”[2]

1. Indian Express, Mumbai edition, June 27, 1976
2. Statesman, Calcutta edition, December 31, 1975.

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The only time Ghandi condoned violence

Posted in History, People / organisations, Places by Dr Mohammad Al-Ubaydli on April 8, 2009

I came across several fascinating stories about Indian women recently and grouped them into one blog post.

India ArrivingFirst, here is the story of India’s first woman stock trader:

It was a man’s world in those busy days. The arrival of the first female stockbroker on the floor of the stock exchange in the late 1980s created a sensation. A tall woman in a sari, she confidently strode toward a particular counter to make her first trade. I was on hand and, to my consternation, the brokers treated her like one of their own. Like any male newcomer, she was disregarded initially; when she tried to force her way into the center of the counter, she was again disregarded, meaning that she had to fight her way in along with two dozen others competing for the jobber’s attention. As I watched her getting pummeled along with the rest as she drilled into the center of the crowd, I wondered how she felt and whether she would be back the next day.

She returned and had her strategy perfectly worked out. She came with a megaphone in hand. Her sari was firmly draped around her so it would not come undone! Standing on the periphery of the counter, she calmly turned on the megaphone to full volume and called on the jobber. The jostling crowd was momentarily stunned into silence, the jobber called out the information she had sought and she made her trade. Since then, she has become a very successful broker.

This is from the charming book India Arriving by Rafiq Dossani which is full of other such accounts from his experience as an investment banker, technocrat and journalist in India.

The next story is from a wonderful two-part interview from Australia’s Philosopher’s Zone radio interview with American philosopher Martha Nussbaum. In the first interview she discussed the social contract in human societies, and in the second she discussed the implications for animals.

Philosopher's Zone

I know that there was a lawyer, the first female lawyer in India ended up defending an elephant, because she wasn’t hired by the usual bar association, and so she ended up working for a Maharajah and he just thought it was fun to put the elephant on trial for trampling the bamboo grove. But I think that was just an entertainment.

Imagining IndiaThe final quote is from Imagining India, the deliciously intellectual book by Infosys co-founder Nandan Nilekani. It is from the chapter about population growth, now understood as a demographic dividend, but in the last century interpreted as an impending disaster. In 1960 India consumed one eighth of the USA’s wheat production, and by 1966 it consumed one fourth. In frustration the government tried all kinds of actions, beginning with persuasion and culminating in the dictatorship of Indira Gandhi and her forced mass sterilizations in the country side. One of the earlier, gentler, acts of persuasion was to teach women the rhythm method. From this teaching comes perhaps the only statement from the great man, Mohandas Karamchand Gandhi, advocating violence:

Wives should fight off their husbands with force, if necessary.

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Annals of globalization and Google

Posted in People / organisations, Politics, Society by Dr Mohammad Al-Ubaydli on February 8, 2009

Here is the latest gem of an advert to reach me on GMail’s advertising:

rtnews

The translation is “Read now what happened in Iraq between Bush and the reporter Muntathir Al-Zaidi”. I have no idea why they advertised this to me (or this, or this), but I was so fascinated by who “they” were today: Russia Today’s Arabic edition. It seems RT has an entire web page devoted to the shoe incident, with news stories from all over the Arab world.

rtnews02

This morning I was considering paying for Relenta (started by another Russian) as a serious producitivity improvement, but honestly the thought of losing out on the entertainment of GMail adverts saddens me.

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Why patients are worried by national electronic medical records

Posted in Medicine, Technology by Dr Mohammad Al-Ubaydli on February 4, 2009

I just spent a wonderful day at Leeds University’s Masterclass in Designing Future eHealth System. There were some very impressive participants, and everyone was generous with their knowledge and expertise.

As I arrived back at Leeds train station though I saw this poster below:

systemoneI took a photo with my phone as I just found the phrasing so striking. It falls into The annals of (what) were they thinking?

The poster, about TTP‘s systemone, says:

8.5 million patient records, twenty thousand users
the future of patient care

I am sure that TTP is proud that their tools store the records of 8.5 million patients, and that 20,000 clinicians use these tools. But there seems to be no worry about the possibility of reading that poster as: there are 20,000 users, each of whom can read the records of 8.5 million patients.

This lack of worry worries many patients as they consider national medical records databases.

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Professionalism when you have no privacy: advice for medical students

Posted in Society by Dr Mohammad Al-Ubaydli on February 4, 2009

This post is the result of a conversation I had with David Doherty (3G Doctor), Dawson Costello (Medical Student Blog) and Rob Navarro (Sapior) on my birthday. I know I should have been discussing more entertaining topics but when faced by three incredibly bright and interesting people I cannot help but try and learn from them. They certainly got me thinking and any errors below are due to my thinking.

The other day I saw a Facebook status update for a medical student saying that he was “Hating patients”. When someone tried to teach the student that this was a foolish sentence to write the student said he thought no one would find his writing interesting. This is a serious error of judgement.

I am not a fan of Facebook’s founder, and one of the things that trouble me the most about the site is that it encourages a mental model of privacy but has a business model of publicity. In other words, people are comfortable sharing information because they have the impression of private conversations with friends, but fundamentally Facebook benefits from spreading your messages as far and wide as possible. This is why they ban applications that reduce the number of “friends” you have.

The comfort you should feel in Facebook is the same you should feel about picking your nose while in your car: it feels private, but everyone can see you. And with video phones, if you are famous enough, someone will record you.

In the long run, this will not be a problem for most people. First, as everyone gets caught doing something stupid in a social network website, legislation will arise to minimize the fallout, just as politicians step in when everyone makes financial mistakes by borrowing too much or saving too little. Second, and more significantly, people will be more forigiving as they see that everyone is falliable. In 2005 there was a witch hunt over a South Korean woman caught on video phone failing to clean up after her dog in a railway carriage appeared on the internet. In 2015 there will be no such recriminations, in South Korea at least, as such an incident will no longer be news.

But there will never be such clemency for doctors. For example, the public reaction to an NHS manager getting in touch with her friends on Friends Reunited has been severe:

Eastern and Coastal Kent PCT assistant director of strategic partnerships Caroline Davis wrote on Friends Reunited: “I now live in Dover, where I work for the NHS, bullshitting for a living, no change there then.”

I found out recently about discplinary action the trust was compelled to take. The reaction towards doctors will be even more severe. Partly this is because there are so few of us, but mainly because we have a duty to society. We receive heavily subsidized training, the public trust us with their lives, and accords us the respect of professionals.

My advice to medical students is simple: assume everything you write today will be read in 20 years’s time. John Steinbeck has a good line on this:

It seems to me that if you or I must choose between two courses of thought or action, we should remember our dying and try so to live that our death brings no pleasure on the world

What you write will definitely be availabe in that time because Google, and its more powerful successors, index and archive everything. And because storing old data costs less than the revenue from putting advertisments around those data, no matter how trivial the data seems to be. And people will definitely read what you wrote because in 20 years you will be a doctor with status in your community. Members of your community – including patients, journalists and lawyers – will regularly study your older writings to look for patterns of behaviour. Do not give them a reason to think badly of you.

If that means not using Facebook, then stop using Facebook. The privilege of being a doctor is far more significant than anything a free website can offer you.

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How can I change my life with no money?

Posted in Books, Entrepreneurship by Dr Mohammad Al-Ubaydli on February 2, 2009

On November 30th, 2008, someone typed “how can i change my life with no money” into Google. The third hit was to my blog post “There is no money in change management”. That person read the article and I doubt that it was useful to their predicament. Whoever that person is, I am sorry I could not help you. But you got me thinking… How could I change my life with no money?

how-can-i-change-my-life

The first thing to say is that no one has no money. At least, no one who has access to a computer with access t0 Google can make that claim. This point is particularly worth making if you are using a computer in a library. Even though you do not own the computer, you have access to someone that can spend money for your benefit, i.e. the library.

OutliersUsing other people’s money is a powerful secret. Henry Ford was a master at it, taking money from the orders of cars, building those cars from suppliers’ raw materials, and only then paying the suppliers. It is well worth reading his autobiography. There is lots of money out there with which to change your life. For example, instead of paying for an expensive course, ask your librarian to buy the books you need for the course and study by yourself. I do this all the time and the librarians are grateful because they have a budget to spend but need help with identifying which books would be the most useful to their community. Around the world, there are grants, scholarships and loans available to help people who are serious about changing their lives.

The next thing to say is that changing your life is hard. Really hard. You have to put in the hours and one book that has had me thinking about this is Outliers by Malcolm Gladwell. I usually gush about his books but a recent review by The Register has me chastened. The main point of the book is worth making though. There is no overnight success, success takes work, and the most successful worked the most.

So if you want to change careers it will take some time. That time includes working for free, or for low wages, to build skills in a new career. This is another example of using other people’s money because the alternative is for you to pay to gain those skills at an expensive course. The education from a job is much more practical and likely to increase your earning power than a university course, providing you are focused on learning from your job.

Finally, the best time to start is now. One of the most interesting things I learned in the USA is what happens when people change jobs. If I sound naive, it is because I had led a sheltered life while working as a doctor. Everyone I had previously worked with or for had a clinical career path mapped out. Job security was high and career progression mostly a matter of time.

But in the USA I saw my worst nightmare on a regular basis: parents fired from their jobs. I also saw something I had not dreamed of: people leaving their current jobs without a plan for what to do next. I do not recommend either scenario, but I will say that a few months afterwards each person was happier than they were in their old job. Often, they had higher salaries, and always they were in situations that they wanted to be in rather than ones they felt compelled to stay in.

So, to answer the question of the anyonymous searcher on my site: use the money of others to train yourself for a new life, and start doing so right now.

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