The Farmer, the Camel and the Cow with a Bad attitude.

Tags

, , , , ,

farmer sickleFarmers in Ireland are bred tough. They don’t come in to see their Rheumatologist with a bit of muscular pain. They don’t come in with a few Heberden’s nodes. When they do arthritis, they do it properly.

The typical encounter with a farmer would be a chap who hobbles in ruefully, asking politely ‘Sorry to bother you doctor, but is there anything you can do for my knees?’. I usually rub my beard sagely and say –  ‘Hmm, let’s have a look at your hips, then’. Chances are that his knees are fine but his hips are shot to pieces. By the time they stumble into clinic you can guarantee that their hip joints are done for. It never ceases to amaze me that someone can develop severe osteoarthritis (OA) of the hips without ever having experienced pain in the hips or groin. And by the way, I still don’t know why OA of the hips is an occupational hazard for farmers. You see people from other heavy occupations who don’t seem to have the same problem. Perhaps it is something to do with the heavy work most of them did on the farm as young teenagers.

Another common example is the farmer with a seemingly straightforward shoulder capsulitis or tendon rupture. When you get down to the story, however, you find – for instance – that he has been dragged halfway up the field hanging on to the back of a tractor driven away by his 12 year old son who had found the accelerator instead of the brake. Perhaps the most memorable ‘rheumatological case’ was a farmer who hobbled painfully into clinic leaning precariously on two walking sticks with the worst knee joints I’ve ever seen. The valgus deformity on each side was at least 45 degrees and the knees had rubbed together with such violence that he had developed huge suppurating rheumatoid nodules.With each step he had to swing from one side to the other using his stick a bit like a pole vault. When I got him up onto the couch his legs seemed to be connected to the thigh by no more than half an ACL. How this man had continued working on the farm for the previous 5 years I will never know. To my amazement, he recovered well after his knees were replaced and he is probably still working on his farm to this day.

camelAnyway, I digress and really must return to the subject of my story. I could barely contain my excitement when a farmer come in to clinic and showed off his impressive knee swellings. I immediately recognised this as the little known ‘Bactrian camel’ sign. The ‘double hump’ is a dead giveaway. Given the usual yarns, I was not surprised when he told me the story of how this all started with being kicked on the shin by a mischievous young cow. It’s never something mundane like an ingrown toenail. For a farmer this is a regular hazard – but his story was tame compared to one of my patients recently who had barely escaped with his life after having been trampled over by half a dozen stampeding cows. Anyway, our farmer had developed a cellulitis in his ankle which was eventually treated in the local hospital. I say eventually because it is highly unlikely that a farmer would go to see the doctor when there was only a little redness around a scratch. He recounted how the swellings had started after the kick and now they were getting a bit painful. When he took his trousers off I was taken aback. The swelling on top of his right kneecap was like a six inch ‘bap’, and just below that he had a second fluctuant swelling above the tibial tuberosity. Both the pre-patellar and infra-patellar bursae were swollen and clearly displayed in all their glory. The profile was unmistakably that of a double hump-backed or Bantian camel. I wish I had taken a photograph for posterity. A large amount of clear fluid was aspirated from each swelling and steroid injected, to the patient’s evident relief.

As an educational aside, it is well known that infected bursitis often occurs in association with cellulitis, and a good long course of antibiotics is called for. However, this is not the first time I have seen ‘post-infective’ bursitis persisting long after the infection has cleared up. There isn’t a strong evidence base when treating bursitis, but in my experience a small dose of steroid can do the trick quite effectively. Some experts counsel weeks of inactivity, but in my experience if you tell a farmer to rest it is likely that you will be wasting your breath.

The old Irish farmer belongs to a stoical and dependable tradition, in touch with the land and in command of their over-worked but hardy frames. But are they a dying breed? I now see so many of them working on well into their 80s because their children have moved away seeking greener pastures and easier lifestyles. As a rheumatologist who sometimes tends to their ‘war wounds’, I salute them.

Share

Were Irish ‘Sweating houses’ used to treat Arthritis?

I’m not much of a student of history, but I’m intrigued by glimpses into the way medicine was practised a few centuries ago. I guess there would be a few people who would be amused to hear that physicians in Ireland were widely known as ‘leeches‘ – presumably because of their expertise in the ancient Galenic practice of blood letting rather than their avaricious nature! The ancient physician went about on horseback carrying around a ‘fer bolg’ or medicine bag, full of herbal remedies.

Among the few remaining physical traces of the physician’s work are the stone ‘sweating houses’ known in Gaelic as Tigh ‘n alluis [Teenollish]. These small one-man huts were built with small entrance portals that people would have had to crawl through. They were dotted around Ireland, often in quite remote rural areas. Quite a few of them are still to be found in remote fields, but I don’t think any have been used for quite some time!

imageA fire would be lit in the hearth inside the sweating house  – using a cart-load of turf – and allowed to burn out leaving the stones hot for the sweating session the following day.

 

A great fire of turf was kindled inside till the house became heated like an oven; after which the embers were swept out; and vapour was produced by throwing water on the hot stones. Then the person, wrapping himself in a blanket, crept in and sat on a bench of sods, after which the door was closed up. He remained there an hour or so till he was in a profuse sweat; and then creeping out, plunge right into the cold water, after emerging from which he was well rubbed till he became warm. After several baths at intervals of some days he usually got cured of Rheumatism

So apparently this sort of treatment was prescribed for people with rheumatism. Sadly we don’t know if there was a secret therapeutic ingredient (although there has been plenty of speculation). I can’t imagine that many of my patients would agree to trudge up the hill, undress and crawl through a tiny entrance into a very rough sauna before struggling out and jumping in the local pond! My ancestors were clearly made of hardy stuff!

sauna_cabinI got to thinking about whether or not there had been some studies that have looked at sauna treatment for rheumatoid arthritis or AS. I know that there is a strong tradition of spa therapy (Balneotherapy) for arthritis and there may be weak evidence of benefit – but what about dry heat? A small pilot study into the potential benefits of an ‘infrared sauna’ for treating RA and AS was published in 2008 by Oosterveld et al. They used an infrared sauna cabin similar to the one pictured and found that although patients felt less pain and stiffness during the sauna, the benefits in pain and stiffness were not sustained. Of course, the study did not include the post-sauna dip into an ice cold Irish peat bog puddle – which could well have been the secret ingredient! I note, with approval, the authors’ use of stiffness as an outcome and their use of the little used EPM-ROM scale for quantifying range of movement. Sadly, there was no sustained improvement in pain or stiffness or range of movement.

So, do you think that the ancient Irish physicians were right about the benefits of the sweating house – or can you prove them wrong?

Philip Gardiner

Wannabe Irish Leech-Doctor
(in search of a sweating house and some good hungry leeches!)


Further reading: A Social History of Ancient Ireland http://www.libraryireland.com/SocialHistoryAncientIreland/II-XIV-4.php

Isomäki H (1988) The sauna and rheumatic diseases. Ann Clin
Res 20:271–275
Nurmikko T, Hietaharju A (1992) Effect of exposure to sauna heat
on neuropathic and rheumatoid pain. Pain 49:43–51

Share

The Robber of Memories: Memory loss in Art and Medicine

Tags

, , ,

20140802-161724-58644003.jpg

…and he recalled that the Magdelena, father of waters, one of the great rivers of the world, was only an illusion of memory’
Gabriel Garcia Marquez ‘Love in a time of cholera’

Probably the most embarrassing experience I will never remember
My first personal experience of a significant memory lapse took place when as a medical student I took part in a study of oral Midazolam. I didn’t feel any different for a few hours after taking the drug and decided that I would make my own way home. An hour later I started to feel very sleepy, and everything for a few hours after that became a blur, a black hole in my memory. I was later told that I had walked into a packed meeting 20 minutes late, sat down in the front row beside the speaker’s wife and had promptly fallen asleep for the rest of the meeting! No matter how hard I tried, I could not piece together one thing the speaker had said or indeed how I had made my way home. Even though this was a trivial event, it was strangely frustrating and my mind kept churning the events over and over for weeks to try and get it back. I felt as if I had been robbed of something precious. It made me wonder what it must be like for people who begin to lose their memory, especially the most treasured memories of their loved ones.

A memorable Film informs an improbable clinical encounter

One of the most striking descriptions of memory loss in art has to be Christopher Nolan’s Memento. In the film the main character tries to compensate for his dramatic and specific deficit in short term memory by tattooing all over his body aide-memoire notes to himself as part of an obsessive and desperate search for the truth. I have encountered many patients with general memory loss in clinical practice but I did wonder if this dramatic failure of short term memory was just a fictional construct or if it could really happen. My question was recently answered when I came across someone with exactly the same deficit, brought on by a bout of encephalitis. She had suddenly become unable to form new memories whilst her past memories remained unaffected and her higher mental function was mostly intact. She continued to work out her puzzles but she  could not retain any new information for more than a couple of minutes. She just could not understand why she couldn’t go home or why people weren’t telling her what was going on. The frustration and anger that this caused was already beginning to distort her normally placid and cheerful character. Apart from ‘locked in syndrome’, I can’t imagine too many conditions more terrible to develop. The ability to remember (and forget) is definitely something we take for granted.

Probably the most memorable book I will always struggle to remember clearly
This leads me in a roundabout way to some of the books I have read this summer. The first was the Gabriel Garcia Marquez classic ‘100 years of Solitude’ which begins with the memorable line “Many years later, as he faced the firing squad, Colonel Aureliano Buendía was to remember that distant afternoon when his father took him to discover ice.” The novel revolves around the Buendia family and the people of Macondo, who have been afflicted by a plague of insomnia whose side effect is a loss of  memory.  We read how the people in this imaginary village had to resort to labelling everyday objects and even write instructions on how to use them.  In the words of Jacob Silverman, “Garci­a Marquez, who has described himself as a professional of the memory, that awareness (i.e. of slippage of memory) must be especially piquant, both because his work is so predicated on notions of memory, history, and ancestry, and because neurological conditions run in his family.” There are many references to memory in his works, and when reading ‘100 years of Solitude’ I almost felt as if I was being transported into a world where I myself was losing my grip on reality and getting lost in an impossible jumble of characters. The thread of history gets tied into so many knots that it takes an effort to unravel it (including regular reference to the family tree, for instance). In spite of the use of magical realism, some of the insights from these books are now being reflected or confirmed by research. For instance, we now know how important sleep is in developing and shaping our memories. Garcia Marquez’ books are also strongly influenced by the author’s experiences and travels in the area of Columbia near the Magdelena river.

Probably the least likely but most memorable travel itinerary in the world

This novel was the inspiration for another book I read this summer: ‘The Robber of Memories’ by Michael Jacobs. Jacobs is another writer with a life long obsession with memory, not to mention his childhood interest in tales of the Spanish exploration of South America. In his own words “The older I got the more I appreciated the role of travel as a stimulus to memories, and the way in which journeys even to new places were somehow always awakening memories of places seen in an ever-receding past”. This book is an intensely personal travelogue/meditation but should be of interest to those of us who want to gain an insight into the experiences of patients or relatives with memory loss or dementia.  ‘Escaping’ for some respite from his role of carer for his elderly mother with dementia, Jacobs embarked on a mission fraught with danger, following in the literary footsteps of his hero Garcia Marquez. Unusually, his journey was a quest to retrace his hero’s love affair with the Magdalena river, ignoring the threat of FARC guerilla attacks to make his way to the source of the river. The story begins with a meeting with the aged author, now himself in the lonely hinterland of early dementia. Garcia Marquez himself has had to let go of so many precious memories, but images of his beloved river had remained. His 81 year-old literary agent Balcells was quoted as saying of him:  ‘Gabo carries a constant glare of nostalgia in his eyes’. That description would have fitted my patient to a tee.

Mingled through the narrative Jacobs reminisces about his parents’ loss of memory and frets with anxiety and guilt about having left his mother. A dread of what might happen to him if he was to follow his parents into the fog of dementia seems to be an undercurrent throughout. He re-reads ‘100 years of Solitude’ and finds evidence that the author may have had a premonition of what was going to happen to him. He meets Marcela, whose mother has Alzheimer’s disease. She tells him about the tales of the disappeared, about the days when two or three unidentified bodies floated down the river every day. In itself, this is a powerful metaphor for the brutal ravages of dementia, separating sufferers from their loved ones in a way that reopens old wounds and prevents them from getting closure for their grief. She said that her mother could still recall some of the trauma but she couldn’t recall where or when they had happened. Jacobs quizzes the locals about the local myth about a ‘robber of memories’ who would visit you in your sleep. It is almost as if he was challenging the robber in his own backyard!

As we are led slowly up the river Jacobs reveals his plan to visit the village of Yarumal, where so many of its inhabitants are struck down early in life with Alzheimer’s disease. The seemingly fanciful idea of a whole community being struck by a ‘plague’ of memory loss is actually based in the strange but real world of the Magdalena. He meets and talks to Fransciso Lopero, a leading researcher who has made the sudy of this unique tribe his life work. Genetic discoveries here have allowed susceptible people in this town to be identified so that in future  potential treatments or vaccines can be tested in this group before they develop clinical symptoms of Alzheimer’s disease.

Many seek for hope at the end of the rainbow: Jacobs sought hope at the source of the Magdelena. And after all, the best research is essentially an adventure into the unknown inspired by a passionate hope and anticipation of discovery. Sadly, Jacobs died from cancer earlier this year. At least he was spared a house call by the ‘robber of memories’.

Further reading
The town of Yarumal and Alzheimer’s disease: Telegraph article by Michael Jacobs
Telegraph Obituary for Michael Jacobs
BBC Article (2011) about Francisco Lopera and his research in Yarumal
Selected quotes and memories of ‘Gabo’ – Huffington Post

More about Alzheimer’s disease from the Alzheimer’s Society

Share

The Rheumatologist, The Student, and the ever so humble Hashtag

hashtagsMany doctors are still sceptical about whether or not using Twitter is a sensible use of their time. I have to confess that before I started using it I had regarded it as little more than a written form of gossiping. For some well established academics with narrow interests and a network of colleagues who shun social media it may indeed be an unhelpful distraction. For others it may seem frustrating that even if one day they happened across a nugget of insight it would disappear from their sight like catching a snowflake. Some early adopters have been put off by finding that even though they may know a hundred colleagues in their specialty, very few of them were using Twitter and even fewer were tweeting about the things that interest you most. But the humble Hashtag has changed all that. Hashtags on twitter are words beginning with the character # and are highlighted in blue. If you click on them you will see an up to date listing on that topic. For the enlightened (or optimistic) medic, hashtags are like Pubmed keywords on steroids. You aren’t limited to any official MESH list of headings and following topics of interest is simple enough for everyone to use. And it can allow us to really filter the stuff that we look at.

The most obvious impact of hashtags among Rheumatologists has been their use to mark out the tweets from conferences e.g. adding #Rheum2014 somewhere in a tweet about the BSR Rheumatology meeting in 2014. If everyone is using the ‘official’ hashtag for the conference, then you will see all the tweets from the conference. This will help you to gain an insight into the sessions you aren’t able to attend and you can also use it to meet up with and get to know other doctors attending the conference (through face to face ‘tweet-ups’). tweetup2At the end of the conference you can collect up the interesting tweets using tools such as ‘Storify‘. But you need to be aware that tweets do ‘fall over the waterfall’ after a week and a general search will not be able to retrieve earlier tweets. This doesn’t matter too much for conferences where the hashtag becomes redundant a day or two after the event, but it can be an issue for tweets that arrive at an inconvenient time. Although the stream of tweets are only catching a tiny amount of what goes on at a conference, experienced users can often summarise the key points from presentations in three or four tweets.

In Rheumatology, we use a number of hashtags to filter content for different audiences/groups. For instance #rheum is mostly used by patients and is a popular general tag. I use it when sharing general information that the public might be interested in. Ronan Kavanagh nominated #rheumedu for more specialist tweets particularly for information that a specialist health professional/trainee specialist might want to view/keep. Keeping one eye on #rheumedu will allow you to quickly find out who is tweeting the sort of material you are interested in and build up the list of people you want to follow.

Why bother with a twitter hashtag for medical students learning musculoskeletal medicine?

I recently suggested that we should use #mskstu for collecting information of use to medical students. I hope that we can help our students by keeping this hashtag to help them track down the very best freely available teaching tips and resources on musculoskeletal medicine. I suppose it could be argued that even if Twitter is useful for professionals, it might still be a bad idea to encourage medical students to start using it. Students do need to maintain a tight focus on what they are learning throughout the course and may have been set a lot of background reading by their university. However, over the past year or two I’ve noticed that a lot more students are using Twitter and reading blogs – and at least part of the time they are using these sources for their studies. There are some great resources out there for students & if they want to use their initiative to learn in this way then I think we should encourage them. Hashtags are also useful for arranging online twitter ‘chats’, particularly if you want to engage with patient groups. You can combine a couple of hashtags in the same tweet e.g. #mskstu and #anatomy – but don’t overuse them!

Any app or program that you use to follow Twitter will have an option to search for a particular hashtag, usually listing results in a separate column. So if you have a column for #mskstu it will collect tweets using this hashtag. If you prefer a more visual presentation then Flipboard can be configured to have a section devoted to your favourite hashtag.


Storing the best tweets for posterity is currently not a straightforward task. One way to store your own personal tweets is to use IFTTT to set up a ‘recipe’ that automatically collects all of your tweets into Evernote. I’m still looking for a tool that would help to build up a teaching resource for students based on the #mskstu – something like ScoopIt can do for web pages, for instance. Your suggestions and ideas would be very welcome.

Other hashtag related resources you may find useful:

Twubs is a site that lets Twitter users form groups around popular hashtags. Hashtags are roughly categorised in a form of unofficial directory. This site could also be used to organise online chats.

Tagdef has columns of information about trending hashtags including “Top today,” “Top this week” and “All time high.” Click on any of the hashtags to learn more information, such as the user-provided definition and related tags.

The final arbiter of the usefulness of the #mskstu hashtag will be the students themselves. So please help get the word out there and contribute your own special teaching tips to help make it worthwhile!

 

 

Share

Going Mobile: Measuring Physical Activity in Arthritis Research

physexerciseIn this article I’m going to give a brief and mostly non-technical review of three recent research trials that seem to confirm that measured physical activity is now being recognised to be an important outcome measure in patients with arthritis and Ankylosing Spondylitis. The wearable technology to make these measurements possible is now available and their scientific validation has been established, particularly in the field of sports science. In sports science parlance ‘physical activity’ is defined precisely in terms of energy expenditure so that activity levels can be compared across the population. This outcome relates more to the duration and intensity of exercise carried out rather than the specifics of movement that might be impaired by arthritis. The focus here is on the impact of exercise on fitness and health rather than on flexibility and mobility.

Hernandez-Hernandez studied a group of 50 RA patients compared to 50 matched healthy controls using a questionnaire of physical activity called the IPAQ and a tri-axial RT6 accelerometer. The authors stated that they wished to study the correlation between disease activity and physical activity. Those in the study wore the accelerometer device continuously for 5 days and their activity was broken down into light, moderate and vigorous activity using standard cut points. ‘MVPA’ was defined as the amount of time spent in moderate or vigorous physical activity. Disease activity was monitored using the DAS28 and disability assessed using the HAQ. They also recorded fatigue using the FACIT questionnaire and quality of life using the standard SF-36 questionnaire. Results: Although there was a weak correlation with the IPAQ, the self-reported questionnaire did not closely match the accelerometer data. The authors found that accelerometry was able to capture physical activity accurately & that recorded levels of moderate and vigorous physical activity (MVPA) in RA patients was significantly lower than that of healthy controls. The MVPA correlated with the HAQ but not with disease activity. Thirty of the RA patients had a second assessment carried out 6 months after the initial assessment. In this subset they found that a significant change in DAS28 (>1.2) correlated negatively with a change in MVPA.

  • This is possibly the first paper to show a convincing negative correlation between DAS28 and monitored physical activity in the patient’s natural setting.
  • This is also one of the first papers to use the IPAQ in RA patients and to demonstrate a difference in physical activity between RA patients and controls. At the moment it looks as if studies should use both a physical activity questionnaire and a tool to measure activity. Even though 5 days of activity were measured, this is still only a snapshot in time for a patient with RA.

journal.pone.0085309.g001

Swinnen et al studied 40 patients with Ankylosing Spondylitis using a ‘SenseWear Pro 3′ armband device for monitoring daily activity. The patients wore the armband all day every day for 5 consecutive days including three week days and two days at the weekend. They worked out energy expenditure (METS) and compared it to values expected from age matched controls. They also examined the relationship between the BASDAI and the actual mobility measured. They did find that AS patients had a lower level of physical activity than controls (especially in the vigorous or very vigorous activity ranges) but did not find that the BASDAI correlated with the degree of difference in activity compared to controls.

  • The SenseWear Pro 3 armband has been validated as a tool capable of measuring energy expenditure fairly accurately. However, the location of the sensor may not be optimal for measuring mobility restriction in AS.
  • The two groups were fairly well matched, but the Healthy Control group had a significantly higher proportion of patients in employment than the AS group. Whilst this is not surprising, it might have been better to only include people in employment in a study like this. Although they attempted to control for this effect, the low numbers in the study may have made detailed analysis difficult.

Significance:

    • This is one of the first papers to measure daily mobility accurately in patients with AS and to attempt to relate this to the BASDAI. A previous study by Plasqui was limited by a very small group size and the use of a less accurate pedometer measurement tool.
    • The authors have employed a well-considered methodology for making sense of the level of physical activity measured by these devices and they have demonstrated that patients can wear them for >90% of the 24 hour periods studied.
    • The study did not report on variations in BASDAI/mobility over time which probably would have been more informative.

stepActivityThe third article in my brief review is by Prioreschi et al in Rheumatology (May 2014). This was a small study studying the effect of DMARD therapy in 18 RA patients using accelerometry and compared results against a matched control group. They also recorded the duration of morning stiffness and more typical CDAI and HAQ score assessments. The patients wore Actical accelerometers for 2 consecutive weeks. Significant improvements in CDAI, HAQ, CRP, and duration of morning stiffness were found after 3 months therapy, and there was also an improvement in the level of moderate physical activity at the end of the study.

  • This is probably the first study to split the day into segments for comparing functional activity: they found that RA patients were less active in the morning and early afternoon, but that this difference from controls disappeared after DMARD therapy.
  • This is one of the first studies to relate the duration of stiffness against the measured activity levels. The results give objective confirmation that activity levels are related to the symptom of stiffness
  • The minimum required % of the day spent wearing the accelerometer was not specified in the paper.
  • The decrease in CRP was found to be related to the increase in moderate activity by multivariate regression analysis.
  • The authors have shown that this methodology can be used as a sensitive outcome measure for detecting changes in habitual physical activity
  • The authors commented that most of the participants were obese: the reliability of hip/belt worn accelerometers can be reduced in this group. However, the finding that DMARD therapy actually leads to increased moderate intensity physical activity in this group is even more likely to lead to health improvements in general.

Overall, I am really encouraged by these studies. I think we are going to learn a lot about our patients over the next few years as we get down to studying the impact of our treatments on their daily activity. I can see this sort of data (‘observations of daily living‘) being incorporated into the medical record and used to provide virtual ‘nudges’ to encourage patients to keep up their exercise programmes. Of course it will only be of benefit if it is done carefully & part of a rehab programme that the patient really wants to follow.

 

Share

Ownership of the Electronic Health Record: a Tug of War?

In some countries such as the US, the medical practitioner still has ownership of the paper medical record, but this does not automatically mean that this will also apply to the electronic version of the same record. Clinical databases have been around for quite a long time, but for a variety of reasons take up has been slow. The reluctance of clinicians to adopt IT systems has been called ‘the wave that never breaks’. Clinicians may yet live to regret their lack of ownership of EMR developments, because it is clear that the control of the Electronic Health Record is being taken out of their hands.

In 2009, the federal government passed into law the American
Recovery and Reinvestment Act incorporating the Health
Information Technology (HIT) for Economic and Clinical Health Act. This provided $19 billion in incentives to hospitals and physicians who demonstrate “meaningful use” of electronic medical records (EMRs). As of January 2014, the use of an ‘EMR’ or electronic medical record system in the US has become mandatory under Federal law. In fact, the new regulations go further than that, providing incentives to introduce ‘electronic health records’ (EHRs) – allowing the sharing of the whole medical record between different providers. This HIE or Health Information Exchange is creating anxiety among patient groups who see this as a violation of their ownership rights and a risk to privacy. In addition, the new EHR is supposed to collect quality data and ‘provide decision support’. To help drive this change the Federal government has set a timetable of progressive cuts in Medicare funding if compliant systems are not introduced. Whilst many US practitioners are complaining about the over-burdensome and intrusive requirements of the new Act, it is interesting to speculate about why the US government is now so interested in enforcing this development. The clinician now finds that their every act is under the microscope, and their remuneration will depend on how well they code and complete the EHR. A recent study in Am J Emergency Medicine where they showed that 43% of the time in a 10 hour shift was spent entering data into the EMR, 12% in looking up results, and only 28% in direct patient care. That’s quite a shocking statistic.

In England, the direction of travel is similar. A recent Health and Social Care Act gave the government the rights to share millions of primary care records (Care.data) with third party buyers such as pharma and insurance companies without having to obtain consent. This has – not surprisingly – caused a great deal of controversy. Although no names were to be included in the dataset, the post-code and date of birth details provided enough information to match data with readily available election database systems and identify the patient. The protests have led to a 6 month postponement in the roll out of the ‘sell-off’. Very few would argue against the legitimate ‘non-consensual’ use of non-identifiable data but this seems to have been handled badly by the NHS without due consultation with patient groups. On the other hand, the NHS ‘HealthSpace’ big plan to give patients more access to their own record – including a summary care record – were axed after initial pilots used such complex registration processes that the take up was extremely low. Those that had taken the time to develop their record had no say when the records were destroyed. Primary care systems are already geared to collect information pertaining to NHS targets, and development of IT systems in hospitals seem to be going in the same direction. Some of these developments may be best for patient care, but others seem to be more about reducing the cost of health care and forcing clinicians to follow government guidelines rather than advocate for the best care for the patient.

However, all is not lost. Patients are another group that is slowly starting to speak up for themselves. Up to now patients have been firmly locked out of their paper or electronic medical record. In the UK, access to copies of the paper record has been restricted to a lengthy and bureaucratic process which can be blocked for reasons that may be difficult to discover. The internet has helped give a voice to patients and enabled them to campaign for more involvement and control over their health care record. From a clinician’s point of view, participation by patients in EHR developments may well have something positive to offer, but many will fear that these changes will cause unforeseen complications to the relationship between the health care professional and the patient. An opt-out option for patients has the potential to disrupt the shift from paper to electronic medical records. And will health professionals be ‘enslaved’ again to their patients by having to answer increasing numbers of queries delivered directly from their patients.

The first step in the ‘patient integration’ of the EHR is to provide the opportunity for the patient to contribute new information to the record. A relatively new term to describe this is ‘Observations of Daily Living’. This is largely uncontroversial, but perhaps surprisingly has not been widely implemented. On this blog I have written about the multi-dimensional nature of outcomes and how clinicians should – if they are able to – take account of the patient’s experiences and level of function. These may be termed ‘PROMs‘ (patient reported outcome measures) and PREMs (patient reported experience measures). Some clinical registries such as DANBIO are already collecting information directly from patients such as disability questionnaires using touchscreen computers in the waiting area. There is no reason why patients can’t enter some of their own data either through workstations, via the ‘web’ or via a smartphone application. And if patients are going to take the time to do this properly, they will want to something in return. Early adopters tend to be more enthusiastic patients who are not always representative of the general body of patients.

Dave_deBronkart-20091229Some patients are campaigning to take things to a whole new level. Dave deBronkart (@ePatientDave) has for some time been campaigning for patient ownership of their own data so that they can participate actively in their own health care. In a popular TED talk he spoke powerfully from experience about how patients can – and should – be participating in their own medical care. For well educated or well connected people with rare conditions, this e-patient approach may well be worthwhile. It is hard to argue that the ultimate ownership of the health record should be in the hands of the patient, although this is going to have to be implemented carefully.

PatientsLikeMeAnother example worth looking at is ‘PatientsLikeMe.com’, founded by James Heywood, inspired by his brother Stephen’s experience of suffering from ALS. He realised that patients needed to know what other patients were experiencing, even though this might not be in the official information given by the health care team. Whether or not you agree with this, there is no doubt that many patients are using the website to record a lot of detail about their experience of their conditions and the drugs used to treat them. Although this is observational information that is not collected in a rigorous fashion it is quite possible that the power of collecting so much data from so many patients may lead to significant ideas for future research and for healthcare changes that have an impact on the patient experience.

So if these are some of the trends at the moment, what will be the shape of the EHR systems of the future? Can the clinician still influence the design of EHR systems to ensure that they suit the needs and working practices of the busy clinician as well as the administrator and the patient. How can we ensure a comprehensive and reliable EHR systems without tying down the busy health professional in digital chains, destroying their precious face-to-face communication with their patient? Do the systems need to be more open ‘patient-side’? How do we go about engaging the public at large with limited education and interest in health care? Will informing patients more about their health care improve public health and drive down costs or will it achieve exactly the opposite? Or are we going to slavishly type in more and more data and accept the dictats of more and more algorithms? follow more and more algorithms as our EHR systems are driven by data collection targets rather than the quality of our care and our ability to communicate effectively with our patients.

 

Reference:

Ferguson T. Online patient-helpers and physicians working together: a new partnership for high quality health care. BMJ 2000;321: 1129-32

Share

Would you be my Bematist?

Tags

, , , ,

alexander-the-great-mapIf I had been around when Alexander the Great was looking for volunteers I definitely would have looked the other way. History tells us that he employed two men – Diognetus and Baeton – as ‘bematists’ to accurately count their steps and thereby measure the distance between cities as his army marched through Asia. Quite how they managed to achieve astonishing levels of accuracy is sadly not recorded, but that is one job I would certainly not have signed up for! Strange as it may seem, but accurate step counting is back in fashion!

The proposal I am going to discuss in this article is that accurate monitoring of physical activity should now be adopted as a standard outcome measure for research in arthritis and sponyloarthritis.

I make no claim to originality here. When I was a trainee in Newcastle upon Tyne in the early 90s, David Walker introduced me to an activity tracker called the NUMACT monitor. Using this monitor, his group quantified the improvements in the actual daily mobility of RA patients after knee injection (70%), and after NSAID use (50%). They then showed a significant (79%) improvement in mobility in OA patients six months after total knee arthroplasty. He compared these results to questionnaires that ask about physical mobility (such as the Nottingham Health Profile) and reported significant differences. Until recently, there had been very few other such studies in patients with arthritis, and I believe that it is about time we followed his forward thinking approach. Before we take a look at these studies, let’s review the rationale for going to all this trouble.

The stated aim of the International Classification of Functional Disability and  Health (ICF) is to “put every person in a context: functioning and disability are results of the interaction between the health conditions of the person and their environment”. They suggest that a new framework for outcome measurement is required, and in the area of assessment of general physical mobility we need to look at the issue through three different ‘lenses’. The first is to use self-reported assessment of problems in daily function using questionnaires such as the HAQ. The second is to measure physical activity under ‘laboratory’ situations (e.g. a ‘six minute walk test’) and the third is to monitor physical activity in the patient’s natural environment (at home, work etc.). This has to be a positive move for patients, as it will help to ‘re-set’ our target towards one that will get our patient back participating fully in their ‘natural environment’ (work, home and leisure).

At the moment the only one of these included as a ‘core outcome measure’ by EULAR/ASAS is the questionnaire assessment. There is no doubt that this is very useful and relatively easy to collect as part of a research project. But ultimately the goal of our treatment has to be to get the person back to the optimal level of function in real life. So can a questionnaire such as the HAQ accurately tell us when the patient’s function has returned to normal? Certainly not: there is a ‘floor effect’ that will not detect changes between no disability and low-moderate disability. And how can you really take account of aids and adaptations? Does the HAQ correlate well with 6 minute walk tests or activity monitoring studies? The research here is still a bit patchy, but it appears that these three ways of measuring of function may have quite different stories to tell.

stepwatchWe should perhaps eat a little humble pie and learn from our orthopaedic colleagues. In the past the success or failure of hip replacement was mainly judged by measuring standard surgical outcomes such as mortality and morbidity but for some years now they have realised that with a younger and more active group of patients the expectations of a good outcome are higher. Surgical success rates are higher than patient satisfaction rates for both hip and knee arthroplasties, and actual improvements in physical activity can lag even further behind. This is a problem, as we have always assumed that an important goal of these operations is to return the patient to a relatively high level of physical functioning. A study by deGroot et al (2008) looked at recovery after hip and knee arthroplasties using all three methods: the SF36 questionnaire, the 6 minute walk test and monitoring daily activity using an accelerometer device. This study reported substantial improvement in self-reported physical activity whilst daily physical activity had not improved to anywhere near the same extent. This surprising result will hopefully lead to renewed efforts to improve rehabilitation programmes.

I also look across at the nearby cardiac rehabilitation clinic with some admiration. Research has shown that a good ‘medical’ outcome after acute myocardial infarction is often followed by a significant loss of mobility and participation in normal activities, and the success of cardiac rehabilitation programmes has been most impressive. What amazes me is how well motivated their patients seem to be in sticking to the rehab plan! I think that our patients who continue to suffer from pain and stiffness due to their chronic arthritis probably need a little more help and encouragement using technology such as activity monitors. In a small but important randomised study Talbot (2003) showed that in patients with symptomatic knee OA, a 23% increase in monitored physical activity was seen in the group given a pedometer with a specific rehabilitation plan whilst those who were given normal education advice showed an actual fall in performance. A striking difference between groups was also evident in tests of isometric muscle strength (the ‘laboratory’ test). This sort of study should give us hope that outcomes can be improved by employing technology in targeted rehabilitation programmes.

So, if we’re all agreed that this is a laudable thing to try and measure, what then should we be measuring and what is already known in this area? ‘Physical Activity’ has a technical meaning in Sports Medicine that many readers may not be aware of: it is all about energy expenditure in METs rather than just measuring steps or miles. If we are talking about achieving high intensity in daily physical activities we need to measure more than the number of steps. In my next post we’ll have a closer look at the approach chosen by a couple of recent studies. I’ll also be having a look at some of the technology out there with an emphasis on the scientific validation of the different monitors. And of course, I must emphasise that at the moment I’m just looking at general function rather than specific joint movements of relevance to the specific disease in question (such as the electronic goniometric glove, for instance).

And by the way, I didn’t know what a Bematist was either – but I thought it might get your attention!

 

 

Share

Carrots and Sticks in the Workplace

Tags

, , , ,

amazon-warehouse-4In many ways you have to admire Amazon as a business.

They do organisation very well. They do big data very well. They collect and make use of their customer’s opinions in a way that has to be admired.

However, there are some who suggest that from an employee’s perspective, things might look a little different. A Panorama documentary recently exposed some of the ‘incentives’ used to encourage maximum productivity among the ‘pickers’ in their warehouses. This has also been the subject of an excellent article by Sarah O’Connor in the Financial Times.

What is not in doubt is that Amazon closely monitors their workers’ movements in order to increase the speed and efficiency of their work. The workers carry computer bar-code readers that count them down to the next ‘pick’ and start beeping when they make errors or get too far behind. As the worker’s performance improves, their targets are increased progressively. They meet with their managers regularly to discuss their performance and temporary workers face the prospect of early ‘release’ if they under-perform. This sort of intensive monitoring may be commonplace in the U.S., but in the U.K. the reaction has suggested that Amazon may be favouring stick more than carrot. So is it the monitoring that causes stress or is it the incentive? What if instead of being afraid of a penalty you could win a prize for the best performance of the day/week? What if you got a bonus for doing more than your target? What if you were competing for the best ‘team’ in the warehouse? I’m sure there are many workers who would westatsportslcome the challenge.

viper_podAn exciting example of the high-tech monitoring of movement at work is the use of the ‘ViperPod’ by most of the UK Premier League football and rugby clubs as well as GAA clubs such as Tyrone. An article in the Daily Mail shows how this small device captures a wealth of highly accurate information about the sportsperson’s movement, energy expenditure and physiological state. The Irish company STATSports now has an impressive international list of clients. Sports scientists Alan Clarke and Sean O’Connor have cleverly combined the latest gyroscope/accelerometer sensors with high frequency GPS and radio-frequency transmitters allowing detailed information on each player on the pitch to be analysed in real-time at the pitch side using their proprietary software. One of the STATSports analysts explained to ‘TheScore’ how this information can be used to prevent injuries as well as optimise performance. The way in which clubs use this information to influence their players could have either a positive or negative effect on their productivity and creativity.

Employers have started to look at using ‘gamification‘ techniques to boost employee health and productivity. Can measuring movement be used to create positive incentives to healthy lifestyle behaviours and improve employee health? Blue Shield have used several, including Shape Up Shield and MeYou. Healthrageous used personalised coaching to encourage healthy choices among employees via their mobile devices, but the business failed to thrive and it was taken over last year by the health and insurance giants Humana. Should people be given a discount if they can prove that they are adopting a health active lifestyle? Or is this an invasion of privacy?

So, what has all this got to do with the jobbing Rheumatologist? Perhaps not very much, but we’re clearly reaching the point where monitoring ambulatory activity in an accurate and scientific way is both feasible and affordable. And it is also becoming clear that this information can be used to alter behaviour, promote rehabilitation and perhaps even prevent injury. In my next post I’ll be looking at the first attempts to measure ambulatory activity as an outcome in arthritis patients.

Share

Measuring Movement by Movies: a Wager, a Murder & an Invention

Tags

, , , , ,

Eadweard Muybridge was born in England in 1930. He moved to New York at the age of 20 and later developed an interest in the new technique of photography. He gained a reputation as a photographer with an incrediMuybridge-The_Horse_in_Motionble dedication to his art. He came to the attention of a wealthy former governor of California, Leland Stanford, who was also the owner of race-horses. There had been debate for many years as to whether or not all four hooves left the ground, but in spite of the observations of many racing experts nobody had been able to come up with a definitive answer. The human eye simply could not analyse and break down such complex and rapid movements. Stanford decided that Muybridge would be the perfect man to provide the proof and help him win a $1 million wager with his friends. Muybridge approached the challenge with enthusiasm, showing both a creative genius in coming up with new inventions to capture the images as well as a highly scientific approach to his ‘research’ into equine movement. In 1872 he produced the first conclusive evidence using a single photograph of a horse with all four hooves in the air. With today’s cameras that doesn’t seem too difficult, but consider that Muybridge had at his disposal the sort of plate cameras that normally were only used for the most static of subjects. Faced with the seemingly insurmountable obstacle of inadequate equipment, he invented an ingenious electromagnetic shutter system that would enable him to ‘freeze’ movement to 1/1000sec. Soon he had rigged up a series of 12 of these cameras along a carefully marked track in Palo Alto – resulting in the sort of ‘movie’ you can see below. His methods were more recently employed in putting together the slow ‘bullet-time’ motion sequences of the film ‘Matrix’. In spite of his early success, he wasn’t satisfied with these studies, and continued to perfect his technique between 1978 and 1884. Along the way, he invented the zoopraxiscope which enabled him in 1893 to show his moving pictures to a paying public for the first ever ‘movie theatre’. Sadly, Muybridge didn’t get the credit he deserved: a subsequent book published by a friend of Stanford ‘Horse in Motion’ used uncredited illustrations based on Muybridge’s photographs. His lawsuit was dismissed out of court.

MuybridgeBoys_playing_LeapfrogIn the 1880s the University of Pennsylvania commissioned him to do a series of studies on humans and other animals. Muybridge’s obsessive work left behind an enormous body of work that was truly groundbreaking in the study of human biomechanics. According to Wikipedia, ‘In 1887, the photos were published as a massive portfolio, with 781 plates comprising 20,000 of the photographs, in a groundbreaking collection titled Animal Locomotion: an Electro-Photographic Investigation of Connective Phases of Animal Movements.’ His human models were photographed in front of a measured grid background & in his work he showed a dedication for both scientific accuracy and artistic merit.

There was a darker, more mysterious side to Muybridge that has fascinated historians ever since. He sustained a severe head injury in a stagecoach accident in 1860, and his friends later commented on a change in his character. At this time he returned to England and changed his career from that of a bookseller to that of a professional photographer. In 1872, Muybridge married Flora Shallcross Stone, then aged 21 i.e. half his own age. Two years later he came to believe that his wife’s ‘friend’ Major Harry Larkyns had fathered his son Florado. He traveled to California to track him down and shot him dead at point-blank range. When he was subsequently tried a jury found him not to be suffering from insanity, but instead acquitted him on the grounds of ‘justifiable homicide’. Did his head injury make him mentally unstable? Did it contribute either to his creative genius or to his obsessive-compulsive tendencies? No doubt psychologists will continue to debate the issue.

So what can the rheumatologist learn from such a remarkable man? Apart from the rather obvious observation that our lives are very mundane by comparison, here are a few thoughts…

Muybridge showed how little we know about the science of movement, and on his own he set out to answer a clear question about whether or not all of a horses hooves leave the ground during a trot. He found that indeed they do, but not in the extended position depicted by the artists of the day. Instead, they were off the ground when curled under the horse. To answer this question, Muybridge had to use all of his creative skills and apply a technical and scientific approach to his quest using the latest technology available to decipher what was ‘invisible’ to the naked eye. This was not exactly a pressing scientific question of the day, but this simple quest led to so much more. His work would predate the ‘gait analysis lab’ by over a century.  One suspects that Muybridge would have been in his element in today’s world when there are a plethora of devices to measure movement. One of the criticisms of wearable technology is that nobody has really thought out how best to use the data to answer important questions to better the lives of ordinary people.

So here’s my challenge: If you were able to drum up support for a modern £10 million wager, what question would you ask someone to answer about human movement? 

muybridge220px-The_Horse_in_Motion-anim

 

Share

Bean-counters, Lamp-posts and Rheumatologists

bean counterI was talking to some medical students recently about the use of outcome measures in rheumatology. I happened to mention that ‘big data’ was the next ‘big thing’ in medicine. Cue blank faces. Followed by quizzical looks and a sly smile. I suddenly realised to my chagrin that not everyone has read Topol’s ‘Creative Destruction of Medicine’ and that my students are beginning to doubt my sanity. I rapidly tried to regain some semblance of dignity by explaining that outcome measures are all the rage in rheumatology right now.

Readers of my blog may have not be surprised to hear that at times I can get a little obsessive about the science of measurement in medicine. So as a form of necessary self-therapy and reflection I am going to explore the darker side of measurement science using a couple of well-known quotations.

einsteinblackboard03The first quote, usually attributed to Albert Einstein (but possibly more accurately credited to a Professor of Sociology, William Bruce Cameron), is as follows:

“Not everything that can be counted counts, and not everything that counts can be counted.”

So not everything we measure or count actually matters. We need to be very selective before we decide that some measurement is essential or routine. There seems to be an assumption that the more we measure the more scientific our care will be and therefore the outcomes will improve. In the case of rheumatology there is now an assumption that if we have a patient with rheumatoid arthritis and we do not complete a ‘disease activity score’ and a disability assessment in every patient we are in some way negligent as doctors. Now I would be the first to argue that early arthritis trials have demonstrated the need to adopt a ‘treat to target’ approach using objective and quantifiable measures to gauge response – but to extrapolate this to patients with 30 years of arthritis may not be either scientific or kind to the person in front of us, particularly when they mention that they have had a recent bereavement. In times like these, ‘feeling the pain’ will often trump feeling the joints. Some measurements may be eminently ‘scientific’ but completely worthless, particularly in managing the individual.

The second part of this elegant chiasmus claims that not everything that counts can be counted. I hope that every health care worker is acutely aware of this fact, but it is at the core of an empathic approach to medicine. How the patient feels cannot easily be reduced to a score on a questionnaire. How well does the doctor understand the narrative from the patient’s perspective? Can we really quantify how well or badly the doctor or nurse empathises with their patient?  There is a feeling that recent changes in the organisation of medical work have disrupted the continuity of care and the integrity of the ‘team’ looking after the patient. Medical ‘clerk-ins’ are reduced to ticking boxes in lengthy proformas and medical handovers are reduced to a rapid fire exchange of facts and figures. Increasingly, doctors complain of being tied to the computer screen completing page after page of data, and having no time to have a proper talk with the patient.  maninfogIn the midst of this swirling fog of data, have we lost sight of the patient? When we teach our students the importance of rigorous data collection and outcome measurement, will we remember to refocus their attention back on the importance of empathy and the art of medicine?

The second quotation has been attributed to AE Houseman or Andrew Lang:

People Use Statistics as a Drunk Uses a Lamppost — For Support Rather Than Illumination

 

This is justifiably a popular quotation and any medical researcher worth his or her salt will doubtless be familiar with the dark arts of manipulating statistics to make the data seem to support your hypothesis. Reviewers of publications have become wise to this, and statistical scrutiny is a little more rigorous than it used to be. Even better, clinical trials registration requirements and ethics reviewers will insist on you defining the primary and secondary outcome measures before the study begins. This only goes to prove that nowadays you need a higher level of statistical jiggery-pokery’ to baffle your readers and ‘stay ahead of the game’.

 

dogLampost

Managers Use Statistics as a Dog Uses a Lamppost — For ‘Marking their territory’ Rather Than Illumination

 

The third quotation could be attributed to a certain PV Gardiner, the writer of this blog. He has clearly borrowed heavily from the afore-named Andrew Lang. He has also used polite and politically correct language within the quotes which readers may wish to replace with more descriptive and direct terminology.

I’ll tell you a story to illustrate the point. A few years ago we were told that we were obliged to carry out an ‘audit’ on our use of biologic drugs in the region. Nothing unusual with that, you may say – they are very expensive drugs, after all. However, we did detect quite a hostile and accusatory sub-text to the discussions. After a little ‘digging’ we discovered that somebody  in management ‘on-high’ had ‘discovered’ that we were using biologic drugs twice as much as the average in the UK. We thought we were using the same NICE guidelines to treat similar patients, so this seemed odd. Cue some anxious head-scratching and navel-gazing by the chastened rheumatologists. Strangely, our own figures hadn’t seemed to suggest any problem at all. Eventually, we discovered that someone in management had been using a single figure (the prevalence of RA in our region) that had changed everything. This figure suggested that RA was only half as common as in the rest of the UK. We were most intrigued. Could it be something in the pure Irish spring water? Could it be our fondness for Guinness or Bushmills whiskey? How had they arrived at such a figure, when there had never been a study of the epidemiology of RA in our region? We have never had a diagnostic database to record the prevalence of RA. In fact, they had obtained the figure from a reference found in none other than the official National Audit Office report into RA in England. That article had briefly referred to comparative data in other nations, and the quoted statistic actually came from a paragraph in a local newspaper where a journalist had mentioned in passing the estimated number of people with RA in our region. Well, it is just as well that we discovered the source of these scurrilous rumours. Otherwise the aforementioned honourable rheumatologists might well have wound up propping up the local lamp-posts (or was that the other way round?). We live to fight another day…

 

Share