I’ve been at the American Congress of Rehabilitation Medicine (ACRM) Conference in Atlanta, USA, this week. My main reason for going was to promote the work of Cochrane Rehabilitation to our North American colleagues. However, I also had the opportunity of collaborating with a great group of academics and clinicians from the US for a half-day pre-conference workshop on self-management training in rehabilitation. (This group included Veronica T. Rowe, PhD, OTR/L – University of Central Arkansas; Jeanne Langan, PT, PhD – University of Buffalo; Marsha Neville, OT, PhD – Texas Woman’s University; Shelley Dean, OTD, OTR/L – Crossway Pediatric Therapy; Candice Osborne, PhD, MPH, OTR – University of Texas Southwestern Medical Center.)
The conference was massive, with over 2000 attendees. However, as many as 29 different conference streams could be running at the same time. As a presenter this meant you could quite easily get lost in the crowd, and end up travelling half way around to the world to speak to just a handful of people. Fortunately, the 75 minute symposium on the work of Cochrane Rehabilitation sparked a bit of interest, and I had a good turnout from an engaged audience – many of whom had extensive experience in systematic reviews and clinical guidelines.
I also had the opportunity to meet with a few key people in ACRM:
- Dr Ron Seel, Evidence and Practice Committee Chair at ACRM
- Prof Marcel Dijkers, Research Professor from Mount Sinai School of Medicine, and lead on a current (massive!) guideline on traumatic brain injury rehabilitation, funded by the Brain Injury Association of America.
- Prof Allen Heinemann, Co-Chief-Editor of Arch Phys Med Rehab
There was a lot of interest in the potential for collaboration between ACRM and Cochrane Rehabilitation. ACRM is already highly involved in systematic review and guidelines work – some of which they externally contract. ACRM has an established relationship with the Campbell Collaboration – which is another excellent, but somewhat newer group than Cochrane, which also publishes systematic reviews but with more of a focus on the social sciences. The main objective for both ACRM and Cochrane Rehabilitation at this stage is to find out about what each group is working on, so that can we work in synergy and avoid unnecessary duplication of activities. Incidentally, much of the guideline work in America ends up in their National Guidelines Clearinghouse, which is a good resource to search when looking for such material. Going forward, Cochrane Rehabilitation and the Evidence and Practice Committee of ACRM are aiming to maintain closer communications about events and activities that we get involved in. Some initial discussion was held about possibly running a collaborative symposium at the ACRM conference in Chicago, 2019.
I also attended a great series of presentations by Tessa Hart, John Whyte, and colleagues about the Rehabilitation Treatment Taxomony, which has now been renamed the Rehabilitation Treatment Specification System (RTSS). I had wondered about the possibility of using this taxonomy in the context of my work with Cochrane Rehabilitation – attempting to identify and classify all rehabilitation-relevant Cochrane reviews. However, the taxonomy is not quite at the stage where it is actually a classification system yet. Hart, Whyte and colleagues have completed some really interesting work to develop a framework for such a taxonomy in the future, but have yet to operationalise this framework into standardised classification system. Nonetheless, the RTSS already has some direct application to treatment description, and a lot to offer in terms of teaching clinical reasoning in the context of rehabilitation – something that I would be interested into introducing into our teaching material at RTRU.
My slides from the Cochrane Rehabilitation symposium: ACRM 2017 – Cochrane Rehab Symposium Slides
I am writing this at Heathrow airport, en route back to New Zealand after attending two conferences. Neither of the conferences were rehabilitation related however both were relevant to the activities of the RTRU. My musings follow:
The first conference was the 16th World Congress of Medical and Health Informatics, also known as Med Info 2017, held in Hangzhou in China. About 2000 hard core “Health Informaticians” from 6 of the 7 continents were in attendance. Health Informatics is a multidisciplinary field which uses information technology to improve health care. I met people from every health profession, economists, policy makers and hard core information technologists, all united by an interest in applying rigor to the use of health information and communication technologies in health care to improve health and wellbeing.
The most rehabilitation relevant session I attended was a workshop called The Two-sided Market Perspective of e-Health where the concept being discussed boiled down to Uber for health services: the idea that an electronic platform, that acted as a neutral transactional space, could allow people with health needs to be match up with, and purchase health services. This is a relatively new concept, although I notice one of the workshop facilitators has already edited a book on the subject! The vigorous discussion highlighted the challenges of “users” not always having sufficient knowledge of services and treatments to be able to judge which “service” is the best fit for them for currently and future health outcomes, the challenges of user rating systems for services (sometimes the medicine tastes bad) and how will payers feel about allowing users/clients/patients to choose their own services in a market place. A similar system, although not digital, being developed for people in New Zealand through “Enabling good lives” where people with disabilities and their whanau identify their goals, the support they require to meet them and then services are matched to enable to them to reach these goals. I also wondered if ACC, currently going through a digital transformation, might provide an online directory of services providers for ACC clients to match with. We are likely to see significant digital overhaul of health in New Zealand in the next ten years so not beyond possibilities.
While in Hangzhou I was also lucky enough to visit the famous WestLake
and visit a Tea Village where the famous and supposedly health-giving Dragon’s Wells tea is grown.
My next conference was the Association of Medical Educators of Europe (AMEE) conference in Helsinki. A larger conference at 3700 attendees was a deep dive into Health professionals education. There was a lot of discussion of Programmatic Alignment, the concept that all aspects of the curriculum from learning outcomes, methods of teaching and learning and assessment should be congruent. So if the learning outcome is to be a “critical consumer of rehabilitation evidence base” the teaching and learning should include practice of critical appraisal and the assessment should require demonstrate of this skill. I will be reflecting this back to RTRU to prompt reflection that we are achieving this in our taught papers. I was also introduced to the curious concept of “Threshold concepts” which are an idea that, once grasped, changes the way learners think about themselves. The concept cannot be forgotten and may be emotionally difficult. An example might be the myth of black/white answers in medicine. These are the “ah-ha” moments in our learning as health professionals. I am still processing this idea but already can recognise a few in my own journey – have you had any? Also I am pondering what are the Threshold concepts in our understanding of rehabilitation. Any ideas are welcome.
While there, I had the chance to visit a bit of Helsinki and I was surprised to find an amazing berry market.
I am returning home refreshed and intellectually invigorated. Now, off to that 12 hour flight…
Residential seminar time! Our REHB 706 Work Rehabilitation students, many of them experienced Vocational Rehabilitation Service or Ministry of Social Development staff, get to meet in person at the Waste Management toxic waste site for the first time. They have all been busy interacting on the Forum since the semester started, so all know each other well, despite being a big group. As you can see we have been very lucky with the weather!
Whoop! Kerry Thornton and I have just published a new paper about the experiences of working-aged adults living in institutional residential care settings intended for much older people. This qualitative metasynthesis arose from some work that Kerry did with me as a mini-research project towards her MHealSc(Rehabilitation). This review was challenging to conduct because of the paucity of research in this area of study, and because of the diversity of social, economic and organisational contexts of institutional living arrangements worldwide. We used ‘sensitivity analysis’ to endeavor to be as inclusive as possible with the data that we incorporated into the qualitative metasynthesis, while concurrently avoiding placing too much weight on less directly relevant or poorly conducted studies. The full paper is available from the British Journal of Occupational Therapy website, where it is currently listed as an ‘early online’ publication: click here to link to the paper itself. The paper is a pay-per-view publication – so email me if you can’t access a copy of it but would like to know more.
Goal attainment scaling (GAS) is a popular method for individualized outcome measurement, but it comes with problems that limit its application. This video provides an overview of why GAS appears attractive as an outcome measure, but also presents some seldom discussed criticisms of its application.
A huge congratulations from RTRU to Dr Emily Thomas who was, just this month, awarded her PhD! Emily’s thesis is entitled “Development of a measure of sense of self following traumatic brain injury” and can be downloaded from the OUR Archive website (click here for a direct link).
In addition to a number of conference presentations, Emily’s thesis has already resulted in one great publication (Thomas et al. 2014) and a book chapter (Thomas et al., 2015). Another outcome from Emily’s thesis has been the finalisation of a new clinical measure: the Brain Injury Sense of Self Scale, which is a interval-level scale that can detect problems with self-identity after brain injury. We are just in the process of setting up a new website to make this measure freely available.
Emily currently works as a rehabilitation consultants for the Solent NHS Trust in Southampton, UK.
1. Thomas EJ, Levack WMM, Taylor WJ. Self-reflective meaning making in troubled times: Change in self-identity after traumatic brain injury. Qualitative Health Research 2014;24(8):1033-47.
2. Thomas EJ, Levack WMM, Taylor WJ. Rehabilitation and recovery of self-identity. In: McPherson KM, Gibson BE, Leplege A, eds. Rethinking Rehabilitation: Theory & Practice. Boca Raton: CRC Press 2015.
When I teach medical students about giving advice to patients about returning to usual activities, I tell them to think about 2 related but distinct key concepts. The first key concept is whether the patient is actually able to perform the usual activity. This involves the assessment of function, and the ICF provides a really useful framework for what function is (but doesn’t tell us how to go about it). The second key concept is how risky it is for the patient to undertake the usual activity. Risk assessment is tricky. It demands a knowledge of the underlying pathology (rugby players might perform fine after a concussion but the risk of a second ‘hit’ is too much) as well as the ways the risk might be managed.
Management of risk is a common strategy in life as well as in rehabilitation clinical practice. This photo shows Kime Hut in the Tararua’s a couple of days ago. I was up there by myself, which is risky. But I (and my family) are reasonably happy with the management of that risk – well-equipped with warm gear, personal locator beacon, GPS, and an attitude to bail out when things turn dodgy (especially weather). Tragically, people die in this place, just 5 or 6 hours walk from civilisation. Kime Hut, itself is named after a tramper who died from hypothermia after being rescued and warmed too quickly.
Perception of risk is another interesting issue. The chances of death from driving in a car in the next year is 1 in 17,000 (2002) yet I encourage my teenage son to learn to drive. What are the risks of harm for a person living alone who needs assistance to get out of bed and into their motorised wheelchair? The overall risk of dying in a house fire in the next year are 1 in 90,000 (about 5 times less likely than dying in a car crash). There is a strong connection between autonomy and risk-taking so that the disability community can sometimes advocate for ‘the right to take risks’. If you are interested in reading more about this, take a look at this report from the Joseph Rowntree Foundation.
I was in Madrid in June for the European League against Rheumatism (EULAR) annual congress. This is the major European conference for rheumatology. Apart from the extreme heat, the major highlights were chairing a meeting of gout experts which helped arrive at some consensus decisions around gout terminology and listening to a presentation from Nottingham, UK that described a randomised controlled trial of nurse-led care for people with gout compared to usual care from their general practitioner. People who received nurse-led care did much better, in terms of gout control and medication use, reinforcing the benefits of structured education and frequent support and monitoring. In addition, I took advantage of the weather and the geographical proximity and went hiking in the Swiss alps between La Sage and Zermatt, covering about 75km in 5 days and about 7000m of climbing up over the passes and down into the valleys. Beautiful views of the Matterhorn and other mountains as well as mountain villages and their postcard perfect chalets.
The management of rheumatoid arthritis (RA) has transformed in recent decades so the inflammatory arthritis is often well controlled with medications used in a treat-to-target strategy. This “T2T” strategy requires measurement of RA disease activity using validated measures and increasing treatment until disease remission or at least a low disease activity state is achieved. Currently the RA activity is determined during clinic visits however these are currently at arbitrary intervals so people are may be seen when they are well and appointments are not always available when people have increased arthritis activity and need medical help. Some data suggest the assessment of RA activity by people with RA correlates fairly well with the assessment of disease activity by health professionals. RTRU academic, Dr Rebecca Grainger, has begun to explore the possibility of the assessment and monitoring of RA being led by the person with the disease rather than the health system. In this new tech world, a phone app seem to be a good option to try. Dr Grainger, in collaboration with her colleagues in RTRU, Hutt Hospital, and the Department of Information Science at University of Otago, first conducted a systematic review of all apps that could enable measurement of RA disease activity by people with RA and for those data to be transmitted to their rheumatology team for monitoring. (This review can be downloaded for free here.) They found the 19 potentially useable app for longitudinal assessment of disease activity,which fell into two categories: 1) simple calculators of disease activity or 2) data tracking tools for people with RA. However, no apps used all the required validated instruments and allowed for data transmission. One high quality app “Arthritis Power” does a great job of longitudinal tracking of validated patient-reported outcomes (PRO’s) and is used for patient-led research but is not suitable for use in “telerheumatology” due to lack of measurement of tender and swollen joints, a key feature of RA activity measured by rheumatologists.
Next steps in this research has been to involve people with RA and rheumatology health professionals to identify required features and functionality of an app for RA disease activity measurement, along with barriers to uptake and advantages of remote monitoring approach. With this information, Dr Grainger’s team has built an app and currently planning how this may be integrated into clinical practice. In parallel with this with, they have also co-designed with people with RA a training package of videos to teach joint count techniques. This will be evaluated in clinics in Wellington, Christchurch and Dunedin in late 2017. Their goal is to enable people with RA to engage in their health care in ways that works for them while still providing appropriate assessment and oversight. Not necessarily “self-management” but “self-led management:”.
We created a new YouTube channel just for RTRU! Here’s my first ever video for our new channel, which is on the topic of how to write a discussion chapter or section in a Masters or PhD thesis or for a publication in an academic journal.