6 March 2019

Patients, rheumatologists and the internet

Red Herring The Profession

“If GPs and the general public don’t even know what a rheumatologist is, and what we can do, how will people with rheumatic conditions we treat well ever come in contact with us?”

I was surprised that this would be one of the major issues on the mind of our newly appointed editor in chief, Dr Irwin Lim, at one of our early catch-ups on the launch of Rheumatology Republic. 

“Referral?”, came to mind somewhat naively. I had until now been mainly publishing in the area of general practice and life science.

Irwin outlined the problem a little better for me.

There were patients with rheumatic disease who were taking a lot of time before they even saw their GP or relevant allied health professional (AHP) for their condition, unaware they could do better quickly. At the same time the flow of knowledge to assist GPs and AHPs in recognising what are potentially vague and early presentations, which could be addressed, is fraught, as is the pathway for them to access rheumatologists in different parts of the country. And when a patient does navigate all of that, getting into the consult room with the rheumatologist can be restricted by waiting times, and cost.

Rheumatology and rheumatologists are relatively isolated in the scheme of things. And they have a low profile. Access is an issue.

How do you move the dial on that?

If the answers seem obvious – the internet, and all who sail on her (and social media in particular) – you should already know that this brings its own very special set of  complications, potential heartache and additional workload, especially for an already busy specialist. 

But look at the trajectory of all information. If we want better access to anything, we all have to be there – somehow. Even an old print publisher, like me.

So it is that Rheumatology Republic, which started out as an experiment to see if we could catch the attention of a community of rheumatology professionals and interested GPs, in print form only, had to evolve a digital presence sooner or later.

Print is still great medium. There are things you just can’t do online. But given the profile, education and access issues surrounding rheumatology, the expansion is natural.So welcome to rheuma.com.au, the digital home of Rheumatology Republic, and it’s new fortnightly email service, Irregular Insights.

Rheuma.com.au, like its cousin site for GPs, medicalrepublic.com.au is unique among medical websites. Its content is almost entirely accessible to your patients as well as your colleagues (there are some obvious exceptions, which is why the site can distinguish between a doctor and a consumer when it needs to).  

Part of the idea here is to put the professional rheumatology community, in front of the patient. Part of the idea is to encourage the professional rheumatologist to join in and contribute to the content, and the conversation.

The newspaper and site distinguishes itself from other rheumatology information sources in that it is rheumatology information generated by the rheumatology community, for the broader rheumatology community, but this, of course, includes their patients.

Such an expansion isn’t easy. It’s why we started only in print. Print is fairly one way, and one dimensional. It’s good for attention. It’s not great for community and for interaction.

To go wide as it were, we’ve had to enlist the help of others – an editorial board of advisors and mentors, from all walks of the rheumatology professional world, who have agreed to help us expand our horizons, both to the profession, and hopefully to some of the other stakeholders: GPs, nurses, allied health professionals, orthopaedic surgeons, sports physicians and potentially, the interested public.

You can meet them all below.

If you haven’t subscribed to our fortnightly email newsletter yet, or you aren’t getting the quarterly print newspaper, you can subscribe by going to the “About Us” tab on the website. 

If you want to contribute please send your ideas to grant@medicalrepublic.com.au. Contributions are welcome.

Dr Irwin Lim – Editor</>

Sydney-based rheumatologist and director of BJC Health, editor of Rheumatology Republic

I was galvanised to start a blog in late 2010 to try and rectify community attitudes to Methotrexate, and to do my bit to improve patient education. Over time, I’ve used social media to amplify my reach and as a way to reflect on what I do. Learning from the people I interacted with online helped shape educational initiatives with allied health professionals and GP groups, as well as a few public awareness campaigns. Our clinic then published an anti-inflammatory cookbook, closely followed by my book, Stuff You Should Know about RA. Rheumatology Republic seems the logical next step.

Dr Samuel Whittle

Rheumatologist at the Queen Elizabeth Hospital in Adelaide, Senior lecturer at the University of Adelaide, ANZMUSC Practitioner Fellow

I am a full-time soccer parent and part-time rheumatologist. I try to squeeze in some academic work, mostly in the car during soccer practices. I’m interested in how we practice medicine, and how this can be informed by evidence, the humanities, scientific reasoning, teaching and phronesis. I also like to casually use terms such as phronesis. I’d prefer to be a professional athlete, and occasionally berate my parents for my modest genetic inheritance; I train in the gym as though I’m still a chance to make an Olympic team one day, which is probably good for me but may lead to some disappointment in future olympiads.

Associate Professor Phil Robinson

Rheumatologist at the Royal Brisbane and Women’s Hospital

I am a rheumatologist in public and private practice and I like to do academic research in gout, too. I am interested in business, finance, investing and like to watch road cycling when my children aren’t climbing on me or when my wife isn’t comparing it to paint drying. And I don’t know what phronesis means, but it sounds like something Sam Whittle would say.

Ms Linda Bradbury

Rheumatology nurse practitioner. Manages the specialist AS clinic at the Princess Alexandra Hospital, co-ordinates genetics research programmes at the Queensland University of Technology

I have over 30 year of nursing experience with the last 20 years being in rheumatology – not quite sure where that time went! More recently I became the first rheumatology nurse practitioner in Australia and am keen to promote the value of the rheumatology nurse – I believe a multi-disciplinary approach to the care of the rheumatology patient is vital. I am passionate not only about patient education but also about sharing evidence based practice with nursing and allied health colleagues, all of which I believe contributes to improving patient outcomes. In my spare time, I love watching most sports and am a keen ballroom and latin dancer!

Associate Professor Rebecca Grainger

Wellington-based rheumatologist, Associate Dean at the University of Otago, on governing body of Health Informatics New Zealand

I think best while outside and walk to and from work three days a week through the bush just to get some thinking time. I wish I had time to follow up on all the great ideas I get while walking. Teaching medical students keeps me optimistic for the future. Our young doctors are amazing, thoughtful, compassionate and dedicated people who ask hard questions and think outside the box. I explore my creativity outside medicine through baking delicious treats, singing while playing the uke and colour co-ordinating my wardrobe.

Associate Professor Helen Keen

Rheumatologist at Royal Perth Hospital and Fiona Stanley Hospitals, research and teaching at UWA, PhD in rheumatological ultrasonography

I’m a rheumatologist in Perth; so I’ve got that going for me, which is nice. In my spare time I like to work on Rheumatology Republic, and have for a few years now been cooking my way through the Australian Woman’s Weekly Birthday Cake Cookbook.

Professor Stephen Hall

Rheumatologist at Cabrini Medical Center in Melbourne, director of Emeritus Research where he has coordinated and conducted more than 200 clinical trials to date

I have been in private practice for 34 years, a simple community practice with an interest in vasculitis and clinical trials. Social media is very new to me but clearly represents a useful direction for education and collegiality. I spend time yelling at football (AFL, NRL) and being entertained by four grandchildren.

Dr Claire Barrett

Rheumatologist in Redcliffe, runs outreach clinics to Longreach and Mackay, senior lecturer at University of Queensland.

I moved to Redcliffe in 1991 for a year and have got stuck. My very tolerant husband, Graeme (O&G), and I live with Misty, the beautiful husky having achieved the very un-Australian dream of getting all five children to leave home before they were 21. My special interest is pregnancy in RA. I hate to sit still and sleep very little. I like a physical challenge such as a marathon, an Olympic distance triathlon or getting to the top of Kilimanjaro; the fable of the tortoise and the hare is at the back of my mind, my target is always completion. To my children’s embarrassment, the closest I come to social media is WhatsApp.

Ms Sarah Comensoli

Exercise physiologist and manager of allied health services at BJC Health, MBA

I’m an accredited exercise physiologist based in Sydney, but initially hail from Wollongong. I’m a Sydney Swans tragic and also a keen trail runner, having recently completed my 10th ultra-marathon in Hong Kong. I’m a certified strength and conditioning coach and have also just completed my MBA, so am looking forward to having more a life! I’ve worked at BJC Health for the past seven years alongside rheumatologists, physiotherapists and dieticians and have recently started dabbling with blogging, aiming to answer some of the challenging questions posed by rheumatology patients when it comes to movement and exercise.