My freelance medical writing and editing work in 2017

A combination of work and domestic pressures has meant that it’s been several years since I last able to sit down in a timely fashion to write a review of my working year. I find that it is a useful thing to do, though: it helps me to take stock of what went well, what could have been done better, and what I might choose to concentrate on (or avoid doing) in the future. For anyone interested in freelancing in medcomms, it also provides a snapshot of a freelancer’s lot, and I hope that it will be useful in that respect.

At the beginning of 2017, I was in the position of having quite substantially expanded my business – in terms of the number of clients that I was working with, the types of work I was taking on, and the size and scope of the projects that I was working on – over the previous 2 years. Realistically, without changing the nature of my business (ie by subcontracting or taking on staff) that expansion could not continue, and 2017 has been a year of consolidation.

For many years now, medical writing has been the cornerstone of my business, with editing and proof reading making up an increasingly smaller part of my workload. I have always enjoyed these area of work, however, and I was delighted to be asked to proof read the annual report and updated resource materials for an international not-for-profit organisation that I have been working with now for 3 years. I also edited a good number of slides – primarily for symposia – during the year. Almost always, these projects also included fact checking the slides against cited references or finding references to back up claims made in the slides. This can be very challenging when the slide concerns the finer points of clinical practice that owe much to the expertise and experience of the faculty member, but which perhaps have never been completely captured in a peer-reviewed publication.

As in previous years, an important aspect of my medical writing work in 2017 was the creation of training materials for members of the pharma sales force. This work is interesting to do because it usually involves assembling multiple modules covering basic information about the disease in question, how it is diagnosed and treated, a competitor analysis and information about the new drug/class of drugs, including a review of the available clinical data. In the past, I have done a number of projects with different medcomms agencies in type 2 diabetes, multiple myeloma, and leukaemia; in 2017, I added chronic kidney disease and mucopolysaccharidosis Type I to this list.

One of my favourite medical writing activities is attending and writing up advisory board meetings, and I had several opportunities to do this in 2017. Each was different in terms of the therapy area (breast cancer, allergy and diabetes), the make-up of the board (one or more of consultants, academics, specialist nurses and pharmacists), and their purpose (two being reviews of the therapy landscape and one a discussion about the positioning of a new drug). While two of the meeting reports were simply for the attention of the board members and sponsors, one resulted in a paper which is currently making its way through peer review.

In a similar vein, I was asked to write summary reports of two symposia, one in haematology and one in psoriasis/psoriatic arthritis. Apart from the obvious difference, these were notable for the fact that in one case I received a very poor audio recording and a correspondingly poor transcript, and in the other case I received very high-quality video recordings of the meeting, along with the slides, which was almost as good as actually being there. Recording meetings is often fraught with difficulty, and bitter experience has taught me to make my own audio recording (with the permission of the participants, of course), also to accept a copy of the agency’s/sponsor’s recording (if there is one), and always to take handwritten notes just in case the belt and braces fail. Copies of the slides (or photographs) also help to ensure that the report is as accurate as possible.

My writing work in 2017 also included a few papers: in addition to the review paper based on an advisory board mentioned above, I was commissioned by a start-up medical device company to work with its lead investigators to publish data from trials of its new fertility device and towards the end of the year I worked up an outline for a paper on developments in aesthetic medicine that is currently back with the authors.

The medical device company was one of three brand new clients for me in 2017. That company and one other (a PR agency) found me through my website (www.freelancemedicalwriting.co.uk), while I found the other client through the MedComms Workbook (http://www.medcommsworkbook.com/) – a freelancer listing service that I thoroughly recommend to freelancers in medcomms. It was also good to work for existing contacts who have moved to new agencies. During the summer, I took a 3-month in-house contract with a medcomms agency in West London. Unhappily, that period coincided with the refurbishment of Waterloo station, which made my commute more difficult than I had expected. Clearly, I didn’t do enough background research there. Generally, I enjoy in-house contracts as opportunities to get out of my home office and interact with real, present, people. They also serve as reminders of the pressures that writers and account managers are under when they place work with freelancers.

So that was 2017, what of 2018? Well, as far as work is concerned, I am off to a busy start. I am looking forward to two days at the European ISMPP meeting (http://www.ismpp.org/european-meeting) later this month and to a Medcomms Workbook networking meeting in March. Having missed both meetings last year, I’d also like to get to at least one of the EMWA meetings this year (https://www.emwa.org/conferences/future-conferences/). I am keen to understand how/if Brexit is going to affect medcomms – one of the topics for the ISMPP meeting – and I hope that this might become clearer during the year. I am trying very hard to keep open-minded about this, and I think that it is important to get out and listen and talk to people from agencies and pharma and device companies about their views and expectations. A particular regret about 2017 for me is that, having suggested them in the first place, I didn’t organise many local meetings for Kent freelancers last year. Hopefully, life in general will be a bit more settled this year and more of these events will happen.

To find out more about me and my medical writing work, please visit my website at www.freelancemedicalwriting.co.uk . You can also follow me on Twitter (@jytricker).

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Book review

You can read my review of the third edition of Liz Wager’s book Getting Research Published. An A to Z of Publication Strategy here.

The review was originally published in Volume 25, issue 2 of EMWA’s Medical Writing journal in June 2016.

To find out more about me and my medical writing work, please visit my website at http://www.freelancemedicalwriting.co.uk . You can also follow me on Twitter (@jytricker).

 

 

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My freelance medical writing and editing work in 2013

When I first went freelance, there were two things that used to cause me great anxiety – not having an IT department to turn to if something went wrong with my pc, printer, broadband connection, etc, and not having enough work.

As I became more established and started to build a client list, I occasionally had the opposite problem – too much work (or rather not enough time to do all the jobs that I had been offered). And if not having enough work was worrying, turning down work for the first time went to another level of scariness!

In the 11 years that I’ve been working as a freelancer, I have learned that the next job will come along, and that it is better to turn work down than to take on a job that I can’t finish to the standard expected by the client (and myself) and in the time required. Feast and famine go with the freelance territory.

Last year was one of those years: feast from January to August followed by famine through the autumn – partly because two contracts were severely pared back, and partly (sadly) because one of my clients went bust. Happily, not only was the failed company bought by a former competitor, but my work also picked up again towards Christmas!

Here are my highlights.

Medical writing

My biggest area of work in 2013 was on training materials. These included modules on new drug classes, procedures or therapy areas for pharma company internal use or for company reps to use with healthcare professionals in the field, as well as a really interesting project that allowed regional sales teams to share their most successful promotional campaigns with similar teams in other countries. While most of the training materials that I wrote were interactive elearning courses, others will only appear in hard copy and one was in the form of a video.

I did a lot of PowerPoint work in 2013. Interestingly, these decks were split between those designed to support drugs at the point of launch, and those that supported products off- or coming off patent. I was also happy to do more work in an area that was new to me in 2012 – payer brochures. Not all of the intended audience for these will have a pharma/medical background, and so it is important to strike a balance with the tone and language used, in order to provide accessible information without patronising the reader.

I have a long-term relationship with a dermatology team in Germany via one of the agencies that I work with, and just at the end of 2013 two reviews that we have been working on for about 18 months – one narrative and one systematic – were submitted. Sadly one was rejected very quickly, but I believe that the other one is progressing to publication.  I also helped a couple of teams to turn the results of surveys of adherence to medication for diabetes and of attitudes to fungal nail disease into manuscripts during the year.

My biggest therapy areas in 2013 were diabetes, eczema and B-cell lymphomas. Diabetes and eczema are areas that I have written about for many years, but B-cell lymphomas were fairly new to me. I also wrote about schizophrenia and multiple sclerosis for the first time.

Editing and proofreading

I continue to proofread the London School of Hygiene and Tropical Medicine’s Community Eye Health Journal, which comes out quarterly. I was also acting editor for three issues of a business-to-business journal for the customers of a medical device company. The latter involved working in-house with the design team at the end of each publication cycle, which was very enjoyable. My slew of PowerPoint work extended to editing and proofreading slides – and I found myself wondering (not for the first time) why you can’t track changes in PowerPoint.

Miscellaneous

This is a new section for this year – inserted because there were two areas of work that accounted for quite a lot of my time in 2013, but which don’t really fall into the medical writing and editing categories.

A few years ago, I was very fortunate to receive formal Zinc training (see http://www.zinc-ahead.com/ for information about Zinc) while I was doing a long-term contract for one of my clients, and I subsequently added it to my freelance offering. This year saw a major spike in Zinc activity, though, and I logged hundreds of hours marking up references for Zinc and creating linked reference packs within Zinc for two existing clients and three new clients.

Two clients asked me to track the posters and plenaries that their clients’ competitors were presenting at international meetings. A lot of the work in this type of project is in deciding how best to display the information gathered.

Away from the keyboard

I was very pleased to be asked by Peter Llewellyn (of MedComms Networking) and Ryan Woodrow (Aspire Scientific) to take part in a series of workshops aimed at current and aspiring freelancers. These were incredibly informative and useful for making new contacts and sharing hints and tips, and I’m looking forward to the follow-up session this year.

I attended the International Society of Medical Publications Professionals (ISMPP)  European meeting in London in January 2012. I was only able to attend for one day, but, as always, it was time well spent for getting up to speed on issues affecting the medcomms industry and meeting new and existing contacts. One of things that I particularly like about ISMPP meetings is that they are well attended by pharma companies, and it is interesting to hear the industry viewpoint.

The European Medical Writers Association (EMWA) held its 2012 annual meeting in Manchester. I spent a very useful two days attending a symposium on writing for payers, various workshops and the freelance business forum. I also had a meeting with the editors of the ‘Out On Our Own’ section of EMWA’s journal (Medical Writing) to discuss a series of three articles that they had asked me to write on how I use social media in my business. The first two are already published (see http://wp.me/p15PpZ-2G and http://wp.me/p15PpZ-2S) and the third will be available soon.

The annual publication planning meeting in London in the autumn as always included a review of changes to the various codes that govern our business, including, of course the US Sunshine Act which had only recently been enacted then. We also had some lively presentations and discussions on changes to the academic publishing model. It was good to see more freelancers attending this (free) meeting – and other meetings organised by Medcomms Networking during the year.

Looking forward

Some of my new clients from last year have already re-commissioned me for this year, which is very heartening, and I have been talking to some potential new clients – some via the Freelance Workbook service and others who’ve found me via my website – about potential new projects. I’ve also been very pleased to do more work with some of my long-established clients.

A very exciting development for me this year is that I have agreed to mentor a student who is interested in making a career in medical writing when she graduates. That will start in the spring and in addition to providing advice on writing style and practice, we will be looking into employment opportunities for new first degree graduates – if you have any thoughts, do get in touch.

5th March, 2014

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SoMe and Me: Self-Promotion and Business Development

The second of my three articles describing how I use social media in my freelance business was published in the December 2013 issue of Medical Writing (©Maney Publishing; http://www.maneypublishing.com) – the quarterly journal of the European Medical Writers Association (EMWA). You can read it here:

Self promotion and business development

I was asked to write the articles by the joint editors of the ‘Out On Our Own’ section of the journal, which is aimed at freelancers, to encourage more freelance medical writers to participate in EMWA’s LinkedIn group and on Facebook and Twitter. These articles are not intended as ‘how to’ guides – I am no expert – I just describe my level of engagement with social media.

The final article in the series will be published in Medical Writing in Spring 2014, and I will post that on Trickerish Allsorts in due course.
To find out more about me and my medical writing work, please visit my website at http://www.freelancemedicalwriting.co.uk . You can also follow me on Twitter (@jytricker).

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SoMe and Me

Earlier this year, the editors of the freelancers’ pages in EMWA‘s journal, Medical Writing, asked me to write a series of articles about how I use social media in my business. These articles are not intended as ‘how to’ guides – I am no expert – but hopefully will help to convince a few more freelance medical writers that using social media doesn’t have to be scary.

The first article was published in the September 2013 issue of Medical Writing (©Maney Publishing; www.maneypublishing.com), and you can read it here.

SoMe and Me_Networking

The second article will be published in December 2013, and I will post that on Trickerish Allsorts in due course.

To find out more about me and my medical writing work, please visit my website at www.freelancemedicalwriting.co.uk . You can also follow me on Twitter (@jytricker)

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My freelance medical writing and editing work in 2012

2012 was a good year! I signed with more new clients than in any year since I went freelance. These included individuals, small medcomms agencies, large multinational agencies, a publisher and, for the first time, an advertising agency. I also continued to work with existing clients – some that I have worked with for a number of years. This also brought a huge variety of work, which I always appreciate.

In contrast to 2011, most of the work that I did in 2012 was on a freelance basis, interspersed with three short contracts. My contacts with new clients were made through a variety of channels: recruitment agencies, LinkedIn, EMWA, my website and a new initiative, the Freelance Workbook. Most of these were in the UK, but I worked with new clients in France and Germany too.

Medical writing

By comparison with previous years, very little of the writing that I did in 2012 was on primary research papers.  Instead, from a writing viewpoint, 2012 was about PR and training. I wrote a number of articles (on biologics and HIV care) for business-to-business magazines, which felt a bit like coming home for me, and which I was particularly pleased to do. Among the training programmes I was involved with were three interactive courses for iPad and/or the web for healthcare professionals , two slide-based courses, and two more traditional booklets aimed at sales and marketing teams. HCPs were also the target for some web copy, a couple of drug monographs and a short series of adverts.

A new target audience for me in 2012 was payers. Demonstrating cost-effectiveness is an important part of bringing drugs to market and the challenge for me was to provide an engaging summary of the therapy area and technology concerned for readers who may not have a medical background, before going on to summarise the health economics data in a fairly short brochure. It’s been challenging, but it’s been absolutely fascinating too.

In terms of therapy areas, 2012 was primarily about diabetes (types 1 and 2), cardiovascular disease, eczema and rheumatoid arthritis. I wrote about Alzheimer’s disease for the first time, did a little bit more work on rare diseases – this time patient leaflets for the parents of babies with rare skin diseases – and revisited vaccines for the first time in a while.

Editing and proofreading

I did more editing and proofreading work in 2012 than I’ve done in recent years. As usual I’ve had a steady throughput of papers requiring editing for English – either from doctors that I work with directly or via med comms agencies – but I did a lot of slide deck edits too. Most excitingly, I have been taken on as a freelance copy editor for a quarterly magazine sponsored by one of the big medical device companies and as a freelance proofreader for a quarterly ophthalmology newsletter produced by the London School of Tropical Hygiene for HCPs and patients in emerging markets. In terms of editing and proofreading, medical devices in their various guises provided quite a lot of my work in 2012.

Away from the keyboard

As in other years, I made sure to get out of my office and attend a few workshops and conferences. This helps to ensure that I keep abreast of changes in the pharma and medcomms industries, and enables me to find out about other things that are going on in the world that might prove useful  in my work. This year these included conferences on changes in the way that pharma delivers continuing medical education to doctors (InPharm), the growing influence of patients in healthcare management and treatment strategies (MedComms Networking), how to use Twitter in business (Digital Surrey) and the use of mobile technology to improve policing in the community (Digital Surrey). The Publication Plan’s annual publication planning workshop proved a great opportunity to learn about how open access publishing is evolving, what it can offer our clients and its customers and to get up to speed on how the requirements of the US Sunshine Act might affect the provision of medical writing/editing assistance to American doctors.

What about 2013?

Well it has started at a frenetic pace! I have been solidly booked since the beginning of the year and each project has been very different from the last – hopefully that is a trend that will continue throughout the year.

I’ve already attended the European ISMPP meeting as well as a workshop on social media for the pharma industry. I am looking forward to the annual EMWA meeting in the Spring, and am hoping to get to other events later in the year. I’m also looking forward to being a panellist at two workshops for new and would-be freelancers that are being held in March.

On the social media front, I feel that it is time to freshen up my website – it’s been up for a little over 2 years now, so a good time, I think, to have another look at the copy and the artwork. I’m still enjoying participating with Twitter and LinkedIn and, as I say every year, I will try to write more blogs!

To find out more about me and my medical writing work, please visit my website at www.freelancemedicalwriting.co.uk .

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Health service or sickness service?

I don’t often manage to make the time to watch the daily Ted Talks, but I inevitably enjoy them when I do and they have always left me with something to think about.

In June, I watched a talk by Rebecca Onie, co-founder and CEO of an American organisation called Health Leads, which really got me thinking – so much so that I’ve been back and watched the video several times since.

Ms Onie talked about how and why Health Leads was established and the work that it does among disadvantaged citizens of the USA. This is inspiring stuff and I encourage you to watch her Ted Talk, but it was one line that really got to me. Rebecca described the frustration of physicians writing prescriptions for medications whose root cause was the conditions in which the patients were living: in essence doctors were dealing with their patients’ sickness without really focussing on their health – was this a health service or a sickness service, she wondered.

The UK Department of Health seems to have been asking itself similar questions. In 2009, it introduced the NHS Health Check – a voluntary screening programme for people aged ≥40 not being treated for cardiovascular disease, diabetes and kidney disease, which is just completing its roll-out phase. The health check uses simple screening tests (blood tests, blood pressure, BMI and patient histories) to identify extant disease or to assess risk factors for developing disease. Follow-up screening visits will occur at 5-yearly intervals.

In the fight against non-communicable diseases (NCDs) I think that this is a worthy programme – I’ve had a health check: it was over in ~15 minutes, the nurse who conducted the test was friendly and reassuring and offered me advice and encouragement when discussing the results of the tests.

It was rather a shame then, to see a review from the Nordic Cochrane Centre in Denmark published this week, which concluded that such programmes do not result in reductions in overall or disease-specific mortality and which recommended that ‘systematically offering general health checks should be resisted’. I was surprised at both the finding and the recommendation. When I had a look at the paper though, I noticed that many of the studies were initiated in the 1960s and 1970s and included subjects who had been born before 1940 – in fact in two studies the subjects had been born before 1920.

Although I’m no statistician and I’m conscious that this is a Cochrane Centre analysis, I’m not sure how helpful it is to make recommendations for today’s patients based on a population whose lifestyle will have been so very different to that of people born after 1960. And although the measurements taken at the screening visits are essentially the same, their accuracy and their meaning in the context of a much wider understanding of NCDs also must be very different. Moreover, the range and efficacy of available therapeutic interventions has changed beyond recognition, which will likely have a greater effect on morbidity and mortality rates in present-day subjects who undergo screening and are found to have disease.

One of the explanations that the Cochrane authors gave for their findings is that the people most likely to volunteer for screening are generally healthier than those who do not. They also voiced concerns that routine testing may lead to over-diagnosis and unnecessary treatment and they quote convincing (and more recent) examples of this.

If the DoH is to continue to offer health checks – and its response to a BBC article on the Cochrane findings implies that it has no plans to even consider stopping – these last two points deserve some attention. It is inconceivable that the NHS would mandate screening checks, so other ways to encourage people to attend need to be sought.

The NHS Future Forum has recommended that every healthcare professional (HCP) should: ‘… use every contact with an individual to maintain or improve their mental and physical health and wellbeing where possible, in particular targeting the four main lifestyle risk factors: diet, physical activity, alcohol and tobacco – whatever their specialty or the purpose of the contact [my emphasis].’ The Forum’s report, The NHS’s Role in the Public’s Health, gives as an example a dental surgery in Manchester which offers smoking cessation studies, BMI and blood pressure checks and even screening for STIs to its mainly young patients, who otherwise have little contact with the rest of the NHS. Also, GPs see women at regular intervals to prescribe contraception, and those consultations could, once every 5 years, be extended to include screening for NCDs.

And with regard to over-diagnosis and unnecessary treatment – well, to my mind, a disease prevention strategy should start with a presumption of no diagnosis and no necessary treatment. However, if you only start to screen at age 40, then this is perhaps a forlorn hope.

In order to prevent NCDs (ie to promote healthiness), I would suggest initiating screening in a much younger population, (perhaps even starting just as people leave school at 18) who can (probably rightly) assume that they are reasonably healthy and who should have fewer anxieties about volunteering to be tested. Over time, such a scheme would allow trends in indicators of healthiness to be monitored and changes addressed before disease sets in and the person has to begin a possibly life-long course of treatment, with all that means for his or her quality of life and for the NHS.

To find out more about me and my medical writing work, please visit my website at www.freelancemedicalwriting.co.uk .

17 October 2012

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My road to medcomms

I would say that, by comparison with most medical writers I know, I took the long way round into medical communications. By comparison with other freelance medical writers I am unusual (although by no means unique) in that I went freelance before I became a medical writer.

After graduating, rather than go on to a PhD, I went to work in the pharmaceutical industry as a process development chemist – taking on likely candidates from the initial safety and efficacy screens and finding and optimising work-arounds to the laboratory synthetic route to make it suitable for full-scale manufacturing.  Having gone on to do similar jobs with Tate & Lyle and then Zeneca Agrochemicals, I came to the realisation that I couldn’t progress my career in the lab without a PhD (which I still didn’t want to do), so I started to look around for a new career.

At about the same time, PJB Publications (whose business was later incorporated into Informa) was looking for an editor for a new competitor intelligence product (AGROProjects) for the agrochemicals industry. It seemed the perfect answer: I’d discovered an aptitude for and enjoyment of writing during my lab career and here was a job that would allow me to develop those skills without completely losing touch with my R&D roots. And I had the challenge and the fun of developing it pretty much from scratch, including making market research visits, working with the design team to come up with a ‘look’ for the product, working with the marketers to develop promotional materials, developing budgets and sales targets and, of course, gathering and validating the content. This was all experience that would prove useful later.

After 4–5 years of growing the AGROProjects portfolio of products I was offered the opportunity to take over the management of the editorial team for the business reports division of PJB. These provided insight into new products and technologies, changes in the regulatory and business environment and company profiles for the pharmaceuticals, medical devices and animal health sectors as well as agrochemicals. (I still find this ‘big picture’ stuff really interesting – and Twitter makes it really easy to stay in touch. I’d definitely encourage other medical writers to take an interest too.) The job came with opportunities to mentor new in-house writers and editors, to provide input into the content of the reports and to commission freelance writers.

At the end of 2002, a reorganisation of the business reports division eliminated the need for an editorial team. My job was made redundant and I took the decision to strike out on my own.  I had work right from the start – primarily editing and proofreading – thanks to the contacts that I’d made whilst Editorial Manager and through former colleagues from PJB who’d moved on to other organisations. Initially though, I couldn’t get work from med comms agencies – they only wanted to use people with agency experience.

I signed with some of the primarily London-based recruitment agencies that handle freelance and interim contracts, and that led to some very interesting work outside of my usual area of expertise. Then in mid-2004 I had a call from a recruiter who was looking for a freelance editor who could also work in-house for a med comms agency not far from where we lived in Berkshire.  I got the job, and MedSense is still a client now – although since our move to Kent I no longer go and work in-house, and I do as much writing as I do editing these days. Over time, working with MedSense allowed me to build up some real experience of agency life beyond writing and editing – liaising with clients and KOLs, helping to run advisory boards, preparing  materials for conferences and symposia, working up designs with the studio and preparing and pitches.

Not long after I started at MedSense I got a call from an ex-PJB colleague who was working with Medical Action Communications (now Innovex) – again they wanted a freelance editor who could work in-house when they needed extra help. I’ve estimated that in the first year that I worked with them I edited and referenced around 1000 Powerpoint slides!

In 2006, my husband took up his dream job in Kent. As a freelancer, I was able to take that pretty much in my stride. Being primarily home-based it was no struggle to combine working and managing childcare in the initial months while he was away in Kent during the week, and then just move my office and client list once we had found a new home and schools for our children.  Since we’ve been in Kent I’ve continued to alternate between short-term and long-term contracts (primarily with med comms agencies) and purely freelance work.

Finally being able to say that I had some agency experience really opened up doors into other agencies, and I’ve gradually been able to add to my client list. Once or twice I’ve become aware that my (twice made) decision not to do a PhD has meant that I’ve been passed over for a job, but overall it doesn’t seem to be an issue. (Although I can point to 7 years in commercial R&D and a couple of peer-reviewed papers to strengthen my credentials as a scientist. )

In terms of sourcing new work, recruiters are still an important source of introductions for me, but just as important are my EMWA listing (http://www.emwa.org/Freelancer-listing.html), my listing on the MedComms Networking site (http://www.medcommsnetworking.co.uk/independents.html), LinkedIn (http://uk.linkedin.com/in/jytricker) and my own website (www.freelancemedicalwriting.co.uk). Just occasionally I think about a permanent position, but not usually too hard and not usually for too long. Freelancing has its downsides of course, but overall I relish the variety of work it brings me and the opportunities to ring the changes in how and where I work.

To find out more about me and my medical writing work, please visit  www.freelancemedicalwriting.co.uk .

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Communicating on non-communicable diseases

Last week, the World Health Organization (WHO) held its annual World Health Assembly (#WHA65) in Geneva, Switzerland. I was particularly interested to read the outcomes of the session on the prevention and control of non-communicable diseases (NCDs) – cardiovascular disease (CVD), cancers, chronic respiratory diseases (eg asthma and chronic obstructive pulmonary disease [COPD]) and diabetes mellitus (especially type 2 diabetes [T2DM] – which took place on 22nd May 2012. Most medical writers will work on one or more of these conditions at some point during their career because of their high prevalence and their correspondingly high levels of interest to the pharmaceutical and medical devices industries.

The background to the session is interesting.

In 2009, the leaders of the International Diabetes Foundation (IDF), World Heart Federation and the International Union Against Cancer (UICC) came together at WHO’s 62nd World Health Assembly to launch a campaign for a UN summit on NCDs to address the demographic-shifting levels of deaths from NCDs in low- and middle-income countries.1 This group highlighted the futility of spending millions of dollars every year to save people from infectious diseases only to lose them at a relatively early age to NCDs, particularly when efficacious drugs to address these conditions are readily available and cheap. In 2010, this group of three founded the NCD Alliance (www.ncdalliance.org), bringing together a network of 880 member organisations in 170 countries to continue to advocate for action against NCDs.

The UN duly held a high level Global Assembly Meeting in September 2011, to which >30 heads of state and government and ≥100 other senior ministers and experts were invited and which upheld the NCD Alliance’s call for NCDs to be added to the development agenda. As a result, the UN charged WHO with setting up a global surveillance programme and making recommendations for voluntary global targets for reducing deaths due to NCDs before the end of 2012.2 Perhaps surprisingly (and underlining the seriousness with which the UN regards these goals), this is only the second health-related campaign promoted by the UN – the first being the campaign to control the spread of HIV/AIDS.

The statistics3 that prompted the UN to act are shocking. NCDs account for 57 million deaths annually (63% of all deaths). Approximately 16% of all deaths due to NCDs occur in the under-60s. A disproportionate number of these occur in developing nations, where widespread death and debilitation among adults of working age could retard industrial development and where in any case the loss of a wage earner throws families back into poverty from where they are more susceptible to the effects of NCDs. Worse, WHO estimates that the proportion of deaths attributable to NCDs will increase by 17% worldwide in the next decade. The key messages to take from this are that NCDs are not conditions only associated with the developed world and not only associated with aging.

The burden of caring for people with NCDs is no less daunting. One in three people has raised blood pressure (a risk factor for CVD), rising to almost one in two in Africa, and one in ten people has diabetes mellitus.4 Moreover, in every region of the world the prevalence of obesity – which is a risk factor in T2DM, CVD and some cancers – doubled between 1980 and 2008.3 Today, half a billion people (12% of the world’s population) are considered obese. Worryingly, it is thought that there are hundreds of millions of people worldwide who are unaware that they have a NCD and whose first contact with the health service will only come when they develop complications associated with advanced disease. No wonder, then, that Margaret Chan – Director-General of WHO – referred to NCDs as ‘the diseases that break the bank’ at last week’s meeting.

It is generally recognised that the slowly progressive nature of most NCDs requires a quite different mindset at government/NGO level to that necessary for promoting control of infectious disease outbreaks. The NCD programme must be goal orientated and focussed on prevention (ie reducing exposure to risk factors such as tobacco use, harmful use of alcohol, unhealthy diet and physical inactivity) and universal access to treatment.1  WHO has announced its aim to work with its existing stakeholders in the education, agriculture, sports, transport, communications, urban planning, industry, employment and finance sectors, in addition to the health sector, to develop a global framework for the prevention and control of NCDs.5

De Maeseneer et al, in their commentary on the aims of the NCD Alliance, agree that a fundamentally different approach is required for preventing and controlling NCDs but disagree that the vertical, disease-orientated approach advocated by the Alliance is the best way to approach the problem.6 They note that altering patient perceptions and behaviours are key aims in preventing and treating NCDs and that this process requires more than just access to medicines. They believe that it is necessary to empower patients, reduce barriers to healthy lifestyles and care that reflects the needs of individual patients and that this is best achieved by global investment in local primary healthcare.

And the outcome of the session at the WHA65? A target to reduce premature deaths due to NCDs by 25% by 2025 – this is a massive target (and an incredible achievement for the NCD Alliance).

Speaking personally, though, I was struck by the lack of any reference to the need for innovation in the approach to the prevention and control of NCDs. We know what the causes are, we know how to prevent NCDs and, as the Alliance has pointed out, medicines are available – but still their prevalence is increasing in countries with well-funded healthcare services and in countries without.

De Maeseneer et al, whose paper was published before WHO assembly, say that: ‘We must fundamentally rethink the way that we address complexity in health problems, in both developed and developing countries.’ And I agree with them.

References

1. IDF, UICC, International Heart Federation. Time to act: The global emergency of non-communicable diseases (2009). Available at: http://www.world-heart-federation.org/fileadmin/user_upload/documents/Publications/Time%20to%20Act%20-%20High%20Res.pdf

2. UN News Center. UN launches global campaign to curb death toll from non-communicable diseases (19 September 2011). Available at: http://www.un.org/apps/news/story.asp?NewsID=39600&Cr=non+communicable+diseases

3. World Health Organization. World health statistics 2010 (2011). Available at: http://www.who.int/whosis/whostat/EN_WHS10_Full.pdf

4. World Health Organization. World health statistics 2012 (May 2012). Available at: http://www.who.int/gho/publications/world_health_statistics/EN_WHS2012_Brochure.pdf

5. World Health Organization. Sixty-fifth World Health Assembly: daily notes on proceedings. (Tuesday 22nd May, 2012). Available at: http://www.who.int/mediacentre/events/2012/wha65/journal/en/index4.html

6. De Maeseneer J, Roberts RG, Demarzo M et al. Tackling NCDs: a different approach is needed. Lancet 2012;379:1860–1. (Free registration.)

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For #raredisease day

February 29th is Rare Disease Day – an opportunity to celebrate steps forward in the understanding and treatment of rare diseases, to pay tribute the people who live with them – and their carers – and to draw attention to the pressing need for more research, more treatments, more recognition and more help to address the hundreds of diseases and disorders which are designated as ‘rare’.

Until a year ago, my understanding of rare diseases was, to say the least, limited. In the last 12 months, however, I have provided writing and editing support to a number of teams working on rare diseases. These have included several blood disorders (porphyria, haemophilia, idiopathic thrombocytopenic purpura [ITP]) and metabolic disorders (hyperammonaemia, chronic cholestasis), as well as hereditary angioedema (HAE) and ichthyosis.

Most of these have the potential to be life threatening. Most require prompt recognition in order for optimal treatment to be delivered before the situation becomes critical. Most are hereditary (although some also appear spontaneously – ie without a family history). All of these affect children.

In the work that I’ve done in the last year I’ve identified some common threads in communications about rare diseases, which I’ll share here.

1.Traditional media – traditional response

I have worked with two teams this year who have been trying to publish papers on the treatment of porphyria and HAE, respectively. My involvement – funded by drug companies in both cases – has been to edit for length and for English. Both papers were summarily rejected by the authors’ first choice of journal for being of limited interest to their readership. This is something of a brick wall, then, against which to bang your head. Most doctors will never see a case of porphyria or HAE (or any other rare disease), but if they don’t know about porphyria or HAE, how will they recognise it if they do? It is all very well to publish in journals that specialise in rare diseases, but you’re probably only reaching doctors who know all about those conditions anyway. This does not help patients, as the following two examples will hopefully help to illustrate.

A couple of the conditions that I have written about this year initially present with very general symptoms. Sadly the most obvious choices of therapy or procedure for those symptoms exacerbate rather than alleviate them, which, if doctors had been able to read case reports on patients with these disorders, could be a clue to the fact that something more unusual is going on.

Haemophilia, renowned as a hereditary disease in males, is now known to affect women and to arise as a result of spontaneous gene mutations. Doctors who are unaware of those facts could expend a lot of time, money and patient goodwill on exploring unexplained and/or heavy bleeding in a patient who could be easily helped by prescribing the appropriate clotting factor.

It would be great … if the general medicine journals could commit to taking a few papers on rare diseases each year. The planting of those seeds of knowledge could make a huge difference to those few patients whose quality of life (even life itself) may depend on it.

2. Social media: making contact and spreading the word

I don’t think that it is possible to underestimate the huge difference that widespread uptake of social media has made and continues to make, to patients with rare diseases, their carers and their doctors. Starting with websites providing news and information about the disease and its treatment, case histories that might prove useful in differential diagnosis, space for discussion and links to other useful sources of information, and moving on to Facebook and Twitter, which provide more natural environments for interaction with other patients, researchers, drug companies and healthcare professionals, social media is generally making the world a better place for people with rare diseases.

Here’s one example of how motivating social media can be, particularly for young people with a rare disease.

British professional cyclist Alex Dowsett has haemophilia – Google him (plus haemophilia) and you will see how social media allows him to reach out to young people with haemophilia (and the rest of us, of course) and let them know that not only can you lead an ordinary life with a rare disease, you can lead an extraordinary life if you are motivated to stay fit and healthy.

Haemophilia is a disorder that we know a lot about, and medication and diagnostics for checking clotting times have been available for some time and are being continuously improved. This is not the case for many rare diseases, however. Going forward, Twitter and Facebook are likely to become essential in the recruitment of patients into clinical trials for new drugs to treat rare diseases. With comparatively few patients being eligible for inclusion in these trials, it is really important to contact as many as possible at the outset and it is easier to do this through social media than through patient records.

France-based Eurordis (www.eurordis.org) – a non-governmental patient-driven alliance of patient organisations representing >500 rare (orphan) diseases in 46 countries – and the US-based National Organization for Rare Diseases (NORD; www.rarediseases.org) have created a portal (www.rarediseasecommunities.org), which links rare disease communities together, provides automatic translations of websites, and acts as a centre for the collection and dissemination of news on rare diseases. I was fortunate to meet Rob Pleticha of Eurordis last year at a meeting for representatives of ITP patient groups and he provided them with useful tips for staying safe online, reaching as large an audience as possible and ensuring the accuracy of information on their sites.

It would be great  … if everyone followed @eurordis and @NORD on Twitter and retweeted their news and requests for help. The more people they reach, the more people are likely to be helped.

The patient is king/queen

The chances are that if you are a patient with a rare disease, or the parent or the partner of a patient with a rare disease, you know at least as much about that condition as most of the healthcare professionals that you will come across. Patient groups play a vital role then in not just being a resource for patients, partners and parents, but also for healthcare professionals.

I was invited last year to act as a scribe for representatives of patient groups from across Europe at an international meeting for physicians and nurses who treat patients with ITP. The whole event – which happens annually – was sponsored by Amgen, who had included the patient group representatives for the first time in recognition of the important role that they play in supporting newly diagnosed patients. In addition to their own sessions, these groups took part in discussions of case studies with the HCPs and led a session on how patient groups can help HCPs in their work with patients.

I found this meeting at the same time profoundly moving and immensely uplifting. It is impossible not to be moved when you hear the how and why these people came to set up or be involved their groups. But it was truly uplifting to hear about their successes, to see how seriously they were taken by the HCPs at the meeting and to understand how deeply committed they were to sharing best practice and supporting other patients with ITP and their families.

It would be great … to see other formal opportunities for patient groups and HCPs to share best practice and learning, and to look at life from the other’s perspective – there were some real ‘lightbulb moments’ at the sessions I attended.

And finally …

The ITP meeting was a watershed for me, coming at the end of a year of closer contact with rare diseases. It inspired me to find out more about Eurordis and to do my bit in the social media that I use to promote its aims. Ultimately, it inspired this blog.

I realise that this is (another) long post – and there’s still plenty that I’d like to say (perhaps another time) – but before I finish I particularly want to mention @Rose_arr and @pjbjib, who follow me on Twitter (@jytricker). They have family members with rare diseases and they’ve been asking me to sign a petition (wh.gov/OMR) to improve state funding for treatments for rare diseases in the USA. I’m not a US citizen, so I don’t think that I can sign it. This, then, is my next best thing, using social media to be an extra voice for the cause – I hope that someone reading this will sign the petition.

To find out more about me and my medical writing and editing work, please visit my website at www.freelancemedicalwriting.co.uk .

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