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Health Insights & being Patient-centric

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It’s the 1st time I’m quoting a document released by a bank.

But this one, entitled Health In Focus peaked my interest. The full document can be accessed here (link).

We are working in an environment of mounting pressure with rising costs with a reduced ability to pay these costs by those who hold the purse strings. In Australia, that’s the government and the paying patient.

Worryingly, there is an inexorably ageing population consuming more and more health resources.

By the way, the numbers are so stark, I thought I’d quote verbatim:

“It’s no small wonder that aged care is widely expected to be one of Australia’s growth industries over the next few decades. The figures tell the story: in 1984 there were 120,862 Australians aged over 85; today there are five times as many and by 2045 there will be 14 times as many.

Put simply, the great cohort of Baby Boomers are getting older and people are living longer: 30 years ago life expectancy at birth was 75.8 years. In 2045 it is projected to be around 90.4, a 15-year increase in just 60 years.”

The report highlights our disconnected health ecosystem. With all the pressures mounting, the current systems are unsustainable. Change is needed.

“Misaligned incentives between state and federal governments on one side and the private and public sector on the other need to be addressed by significant reform and market deregulation. Additionally, information asymmetries in the patient-practitioner relationship often result in the inability of patients to take ownership of their health journey. And data isn’t always recorded or readily accessible to facilitate decision-making.”

I’m sure you all can relate to that.

Given BJC Health’s vision is to create best care for people with arthritis, and how we aim to achieve this is with our connected care approach, I really liked the following from the same document:

Future Connected Patient Design Principles

  • Make life easier and more convenient for me
  • Let me take ownership and empower me
  • Include and respect me in the relationship
  • Provide me with confidence along my journey
  • Keep me informed
  • Enable transparent access to my information
  • Give me the best care you can
  • Reduce my costs

Lots of good guiding principles to design health delivery around. Many are hard to provide without going out of the comfort zone and thinking outside the square.

Do you have any thoughts on this?

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Balancing odds of drug working vs chance of side effects

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Courtesy: digitalart @ FreeDigitalPhotos.net

Courtesy: digitalart @ FreeDigitalPhotos

 

This is a conversation I thought I’d share as it seems to touch on very pertinent concerns.

As you know, I write a bit about Methotrexate as it seems to be quite a maligned drug. These posts are popular and this particular conversation took place on the comments section of Why Methotrexate is My Current Go To Drug in Rheumatoid Arthritis.

Rosiet is 8 months post-RA diagnosis and is at the point of contemplating Methotrexate.

Rosiet: “I am trying very hard to educate myself as I move through this disease. I am not sure yet if your words have comforted me to the degree of accepting the <Methotrexate> , but <at least, it has> given me more information.”

While there is so much information on the internet, it can be so confusing for someone faced with a chronic illness.

They can read scary things about the disease. They can read scary things about medication. They can read confusing and sometimes, contradictory info about a variety of treatments, potions, remedies and snake oils. They can also research medications, and get wildly different opinions.

I take this as a reminder that we rheumatologists need to keep improving information and resources for patients to access. Patient support associations also need to become more visible so that people looking online actually come across their services.

Rosiet: “And, what I am just figuring out is that none of these drugs have much of a ‘success’ rate nor longevity to them. I am understanding that odds for each drugs effectiveness are relatively low to a high chance of side effects and that after an amount of time they stop working . . . and, you have to spin the wheel again . . .”

I’m wrote back as I did not agree with that assessment but I can understand how someone trying to find information online can be led to that opinion.

Rheumatoid Arthritis is not one single disease that acts the same way in every patient.

There is variability of severity, there are different outcomes for different patients, there are differences in how well people respond to medications, and of course, side effects occur in some and not in many others.

So it’s not that easy to determine the likely success rate of a particular medication in any one patient. It’s also not easy to say with certainty whether a patient will have a side effect or not.

Rheumatologists do try to make these assessments as they weigh up the history, the findings on examination, other health issues the patient may have and various test results.

For Rheumatoid Arthritis, “success” depends on many factors. Some of these include:

  • the window of opportunity: earlier treatment leads to better outcomes
  • treating-to-target: use of medications & close monitoring of response with swapping of medications as needed to get a better response
  • poor prognostic factors: how aggressive the disease is, how many joints are affected, how much inflammation is present clinically or using imaging or blood tests
  • negative factors such as periodontal disease, smoking, excess weight, etc

As a guide, Methotrexate works best early in the RA disease course with a good chance to achieve a remission state – around 40% using Methotrexate as the sole disease-modifying agent (DMARD).

This does not mean 60% do badly.

They will not have as good control of the disease and to obtain better control, changes or addition in medication therapy need to be considered.

Rosiet: “So, you would say that I, as newly dx’d, have a decent chance for full remission considering the Plaquenil has given me some relief on it’s own. And, it is a matter of running through each drug to find a ‘tolerance to healing’ ratio? I will admit that after not being able to take the sulfasalazine and looking toward the MTX and it’s myriad of side effects I am feeling apprehensive, at best. Along the line of the ‘tolerance to healing’ ratio, in your opinion is there a gray area where side effects are accepted to a degree with good drug response?”

My response:

In general, Plaquenil would be considered a weak DMARD on it’s own. Most of us would start with Methotrexate as 1st line DMARD for Rheumatoid. I suppose there are occasions when rheumatologists would use Plaquenil at the start, for eg, if pregnancy was being pursued, or the prognosis of your type of Rheumatoid was considered very good (based on a range of features including those I listed previously).

There are of course gray areas.

Any treatment decision is a balance between the probability of a good result vs the possibility of a side effect.

Have you had similar worries to Rosiet you haven’t voiced?

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
BJC Health’s vision is to create best care for people with arthritis. Contact us.

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This blog focuses on arthritis, healthcare in general, and Connected Care.
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How do people tolerate tophaceous gout?

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By Dr Irwin Lim, Rheumatologist

It’s school holidays. I’m with my family visiting Malaysia.

This taxi ride took longer than expected as the driver took a number of wrong turns. I didn’t mind too much as I was looking and worrying about his hands.

IMG_5750.JPGIMG_5740.JPG

This appearance is that of tophaceous gout.

IMG_5737.JPGThe lumps are collections of uric acid. These need years to accumulate!

Years of either ineffective treatment or no treatment at all. I can’t imagine doctors would not try to treat this.

My experience is that a certain group of patients just seem to accept this and this group does not seek medical treatment.

I don’t understand how they tolerate these lumps growing?

I don’t understand why they don’t do everything it takes to avoid the worsening deformity and damage to the joints.

Or perhaps, we doctors, don’t explain it well enough. Maybe we don’t make it clear that this should not be accepted.

With this gentleman, it is likely to severely affect his ability to earn a living. I’m not so sure how easy it’s going to be for him to drive safely in the future.

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
BJC Health’s vision is to create best care for people with arthritis. Contact us.

Subscribe to Dr Lim’s Blog

This blog focuses on arthritis, healthcare in general, and Connected Care.

Enter your name and email address to subscribe to this blog and receive notifications of new posts by email.

EULAR 2015: my Rome rheumination

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By Dr Irwin Lim, Rheumatologist

The EULAR (European League Against Rheumatism) scientific meeting was held in Rome in June.

I had the opportunity to attend as did around 15000 others.

A big, busy meeting. Usually I share some reflections of what I learned from the meeting but this time, I was a little disappointed.

Let me clarify.

There was lots of data, and lots of great research and content. But there are only so many sessions any person can attend (multiple sessions are held concurrently). At the end of any conference I go to, I like to reflect on what I’ve learned from the sessions I managed to get to, that will then change what I do when I return to my clinic.

I’m not so sure I found the pearls of wisdom, or experienced the lightbulb moments this EULAR congress.

So I decided instead to share with you some amusing aspects of the trade exhibits.

Firstly, it’s much, much larger that anything we typically get in Australia.

Trade1

Trade2

I wandered around many stalls, and frequented the ones which provided coffee. Coffee remains a crucial ingredient in surviving conferences, particularly as one battles the midday jet lag.

Here are 3 personal highlights, and none of these were for scientific content:

First at the Pfizer stand. Oculus Rift! I’ve heard about this virtual reality headgear gizmo so I stood in line to test in out. I was flying in space, in a reasonably convincing way. Then, a 1-2 minute virtual reality video on how JAK-inhibitors work. Content so-so but the tech was cool.

Oculus Rift

Next, the BMS stand. A large touch screen. Choose your colour scheme, choose various graphics, and it all comes together on a poster. A few minutes later the poster is printer, rolled, placed in a tube ready to bring home. I was also emailed a pdf which I now share.

Understanding RA flyer

Finally, the Roche stand. Long queue. Stand in front of a green screen, your hand is positioned, whack on a smile and you can then choose a local backdrop. Voila!

MyEular

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What if you’re forced to substitute biologic to biosimilar?

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By Dr Irwin Lim, Rheumatologist

Consider the situation where you have a serious chronic arthritis. It took time to diagnose, then time to work through a number of medication combinations before you & your rheumatologist finally found the right biological DMARD for you.

Let’s say it’s working well and you’re happy with the results.

Then, the funding body, be that an insurance company or the government health body in charge, decides that you no longer need to be on that particular brand. Instead, they make the choice for you or leave it to the pharmacy to swap you to another drug.

That would be OK if the other drug was IDENTICAL.

The problem is that with biologic DMARD therapy, this is not the case. These are large, complex, molecular compounds that are synthesised in living cell lines.

We aren’t talking about Paracetamol, a simple molecule that you can make generics from easily.

There are not any biologic DMARD generics.

There are a group of medications coming called biosimilars. These are agents which are designed to be similar but it’s technically impossible to make them identical.

Now, there is great hope for these biosimilar compounds. Choice is important and more options are great (because they are different from what we already have). In addition, they will be cheaper than the originator compounds and should lead to reductions in price of the biological DMARDs in time.

But, the important thing is choice.

Most people would not like to be forced to swap from a medication they tolerate well and/or have a good result from to a different, yet similar, medication which they have never tried. Disease control can be lost, side effects may occur, drug resistance could possibly occur.

Seth Ginsberg, from CreakyJoints shared with me the following survey results.

Patient Perspectives on Biologic Switching

Patient Perspectives on Biologic Switching

A regular contributor to this blog, Naomi Creek, who is the coordinator for CreakyJoints Australia is fighting moves in Australia to allow this forced substitution.

What are your thoughts?

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
BJC Health’s vision is to create best care for people with arthritis. Contact us.

Subscribe to Dr Lim’s Blog

This blog focuses on arthritis, healthcare in general, and Connected Care.

Enter your name and email address to subscribe to this blog and receive notifications of new posts by email.

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