HealthPathways, RACP & NICE guidelines - how do they fit together?

[Ravn]

I used to think - wrongly - that HealthPathways was a NZ thing. Turns out there's a long list of Australian health districts participating, plus three British ones.

HealthPathways is an online manual used by clinicians to help make assessment, management, and specialist request decisions for over 550 conditions.

Rather than being traditional guidelines, each pathway is an agreement between primary and specialist services on how patients with particular conditions will be managed in the local context. Each health jurisdiction tailors the content of HealthPathways to reflect local arrangements and opinion, and deploys their own instance of HealthPathways to their clinical community.

https://www.healthpathwayscommunity.org/About.aspx

So that's one set of guidelines. We all know about the NICE guidelines. And recently we learned that another set of guidelines by the Royal Australasian College of Physicians (RACP) are going to be updated (see post here: https://www.s4me.info/threads/news-from-new-zealand-and-the-pacific-islands.4230/page-16#post-210499).

So in Britain, in some regions, we have NICE and HealthPathways.

And in most of NZ and Australia we have RACP and HealthPathways.

Do these different guidelines compete or do they complement each other in some way?

They all seem to be being updated independently of each other and at different times. Wouldn't that create a risk of them containing contradictory information at times? Which would be confusing for doctors.

As an aside, I don't like the word 'opinion' in the HealthPathways description: "Each health jurisdiction tailors the content of HealthPathways to reflect local arrangements and opinion".

 

[Hutan]

My understanding is that the Health Pathways software was developed here in Canterbury, NZ. I think most of the regional health authorities (district health boards) in NZ use it, as well as a number of Australian and UK heath authorities. From memory, Health Pathways claimed that over 28 million people lived in health authorities using the Health Pathways software.

It is really a method of delivery of best practice and local content (referral details for local specialists and patient groups and so on). Each regional health authority that is a member of Health Pathways agrees to let the others see their content and it can be copied. But each regional health authority has control over what they include. The content is written so that a GP can consult it during an appointment with a patient - so it's brief and concentrates on the key points.

So, a UK health authority using the Health Pathways software would presumably make sure that their content reflected NICE guidelines as well as referring to respected local patient groups and specialists.

My understanding is that if a regional health authority updates a pathway and feels that it is particularly good, they can mark it as one recommended to be used as a base for others.

 

[Hutan]

Dr Graham McGeoch was a key person in the development of the Health Pathways software. He is the doctor that our local patient group has worked with to develop a Pathway for 'Chronic Fatigue and ME/CFS' for Canterbury.

McGeoch G, McGeoch P, Shand B Is HealthPathways effective? An online survey of hospital clinicians, general practitioners and practice nurses. New Zealand Medical Journal 2015;128 (1408):36-46. http://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2015/vol-128-no-1408/6413

Abstract
Aim: An online survey was used to determine the perceptions of healthcare professionals in Canterbury on HealthPathways, a website that provides clinical and referral information for general practice teams, relevant to locally available health services and resources.

Methods: The survey questionnaire included questions on the effectiveness and ease-of-use of the website, computer literacy and use of online clinical guidance systems. Differences in the responses between work groups were analysed using the Mann-Whitney test.

Results: 249/480 (52%) of general practitioners, 72/156 (46%) of practice nurses, and 43/66 (65%) of hospital clinicians completed the questionnaire. Approximately 90-95% of general practice teams considered the website was easy to use and had contributed to both an increase and improvement of care in the community, with about 50% stating that it had improved their relationships with patients and hospital clinicians. Minor concerns included the website’s increasing size and prescriptive nature and that it increased the duration of a patient consultation. Approximately 60% of hospital clinicians reported improvements in referral quality and triage and working relationships with general practices since the introduction of HealthPathways.

Conclusion: HealthPathways has achieved a high level of acceptance in both primary and secondary care, and has therefore acted as a valuable change management tool increasing healthcare integration in Canterbury.

 

[Hutan]

If your regional health authority uses the Health Pathway system, then I do think that it's worthwhile to get to see what the Pathway(s) relevant to ME/CFS says. As this is what a busy GP is likely to be looking at when they aren't quite sure what to do.

If the Pathway is bad, then there may be scope to improve it, by finding a sympathetic person with responsibility for the content and presenting evidence (and pointing to improved recent Pathways that other regional health authorities are using).

And if the content is good, then you can educate patients to remind GPs to look at the Pathway if they start talking about CBT and GET and thinking positively and don't know what PEM is.

Once the NICE Guidelines are improved, the Pathways in the UK won't necessarily immediately be updated. The Pathways tend to be on a schedule for 3 year or so review unless there is a compelling reason for something to be changed earlier. So, some campaigning may help to get the Pathway relevant to ME/CFS updated as soon as possible in your region.

 

[Trish]

Is there any way we can find out whether it is used in our local area, and look at the content?

 

[Hutan]

This was the list of participants in 2016, but I know there are more UK ones now.

New Zealand DHBs
Southern; South Canterbury; Canterbury; Nelson-Marlborough; West Coast; Auckland Regional; Northland; Wairarapa; Hutt Valley; Capital & Coast.

Australia Local Health Districts
New South Wales: ACT and Southern; Central Coast; Hunter New England; Illawarra Shoalhaven; Mid & North Coast; South Western Sydney; Sydney; Sydney North; Western Sydney.
Queensland: Cairns; Central Queensland; Wide Bay; Sunshine Coast; Mackay; Townsville,
Western Australia
Victoria: Eastern Melbourne; Gippsland; Melbourne; Murray; Western Victoria,
Tasmania.

United Kingdom
South Tyneside
​

The Pathway material is strictly for medical professionals - they tend not to be too keen for anyone else to see it. But usually there is someone in a patient group who can get access to see what is in there. It's difficult to print it out, as it tends to be full of links e.g. if there are symptoms of multiple sclerosis, you get a link to the multiple sclerosis page, or there might be a link to the 'management of long term disabling conditions' page so that material about how to get your patient disabled parking doesn't have to be repeated on lots of pages.

The Pathway material is 'translated' into information for public consumption on the 'HealthInfo' system - also locally based but accessible by everyone. So that should give you an idea of how bad or how good the content for doctors is.

 

[Hutan]

Looks like it is in Cardiff and Vale UHB.
https://shapingourfuturewellbeing.com/healthpathways/

Existing referral pathways are being rewritten by primary and secondary care subject matter expects in adherence to NICE guidelines. Comments from fellow clinicians are encouraged via a feedback button on each page, facilitating further sharing of expertise.

If you are in the Cardiff and Vale UHB it sounds as though now, or at least as soon as there are new NICE Guidelines, would be a good time to try to make sure the pathways relevant to ME/CFS are accurate and helpful.

• All primary care clinicians in Cardiff and Vale UHB can request access to HealthPathways. For more information, or if you’d like to contribute to the co-production of new pathways, email: healthpathways@wales.nhs.uk

 

[Jonathan Edwards]

It looks as if Health Pathways is chiefly about referral to other health professionals from primary care.

NICE guidelines are about what sorts of medical modalities are considered worth providing within a healthcare system and at least in there they do not cover his you go about delivering those. So in theory they have a complementary function.

The problem I see is that there is pressure on primary care to cut costs and to develop 'pathways' based on that rather than ensuring patients get the modalities they should. There is also an interest in keeping the process under GP control, so referring to a psychotherapy or physiotherapy service may look more attractive than referral to a hospital where someone else is in charge and takes the credit.

In the UK the Royal College of General Practitioners is building up a list of 'toolkits' for managing problems in primary care rather than seeking expert advice. From what I have seen these may be produced by any enthusiast who gets the job. I think there is a major risk that following these guidelines will bypass NICE.

The real problem here is the conflict of interest primary care in trying to cut costs and keep control. In my view primary care should not be separate from hospital care in any administrative way. For most conditions primary care is just an obstacle to effective management,

 

[Hutan]

It looks as if Health Pathways is chiefly about referral to other health professionals from primary care.

That isn't correct, at least in my experience. The pathways in the CDHB that I have looked at or had input into cover diagnosis and management as well as referral. They do really condense what would be in a guideline into something the GP can use in the 15 minutes with a patient or perhaps the 5 minutes afterwards when the doctor wants to quickly find out what they should do next.

The real problem here is the conflict of interest primary care in trying to cut costs and keep control.

But I agree with this, although it's more about health boards wanting to keep care at the primary level. I've been amazed to see what pressure there is from the District Health Board to keep patients away from specialists and hospital clinics. Some of it is fair enough; if GPs are resourced and supported adequately maybe they can cover most things. But it does mean that, in my region, it is unlikely that any one doctor will see enough patients with ME/CFS to ever become an expert or notice patterns that might move the understanding of the illness forward. Even things like multiple sclerosis are managed primarily by GPs after diagnosis.

And it does seem to result in much more readiness to spend health funding on referrals to physios and psychologists than on medical specialists.

For most conditions primary care is just an obstacle to effective management,

Perhaps so, but where I live, primary care is pretty much all that we get, unless we are sufficiently close to death to warrant getting into hospital via the emergency department.

 

[Jonathan Edwards]

The pathways in the CDHB that I have looked at or had input into cover diagnosis and management as well as referral.

Yes, but in a sense they have to cover those in order to say anything sensible about referral. The GP accesses the software to decide who to send the patient to, or to have an excuse for not doing so and muddling through. A major motivation for these pathways is to reduce referral or delay referral. Another is to divert referral to cheap 'community based' services (which may be housed in a hospital but come under a community budget).

Perhaps so, but where I live, primary care is pretty much all that we get, unless we are sufficiently close to death to warrant getting into hospital via the emergency department.

But what is 'primary care'? Why should there be such a thing in an internet based society? I think we have been bamboozled into thinking that the GP model that was useful in rural communities in the 1950s is still suitable. It is absurd that MS is cared for by people who have only ever seen ten cases. We need to wake up to the fact that, at least in countries with NHS type systems, we are just not getting modern medicine much of the time. GPs pretend they can sort anything but the last time that was realistic was when I did some GP in 1980 and even then it was marginal. There are geographical constraints but if there was a will these could be overcome very easily.

 

[Hutan]

Found the up to date list of coverage:

 

[Ravn]

The Pathway material is strictly for medical professionals - they tend not to be too keen for anyone else to see it.

Which is just sooooo frustrating.

But usually there is someone in a patient group who can get access to see what is in there.

No such luck. If anyone here happens to have a contact in the SDHB prepared to 'leak'....

The Pathway material is 'translated' into information for public consumption on the 'HealthInfo' system

HealthInfo in NZ seems to be limited to Canterbury and the West Coast.

 

[Hutan]

Announcement of the publication of the Canterbury District Health Board's Chronic Fatigue and CFS HealthPathway here.
News from New Zealand and the Pacific Islands

 

[Hutan]

In reply to @Yessica 's query elsewhere:
The HealthPathways material is owned by HealthPathways and can normally only be accessed by medical professionals. It's not ideal as far as transparency goes, but it's the system we are working in. Also, even if I was allowed to, it's quite hard to share as a document, because there are lots of links to other parts of the system and drop down sections.

The HealthInfo site translates the HealthPathways information for the public. It uses simpler language - with the result that references to the symptom of fatigue in the material for doctors were initially changed to 'feeling tired' in the public version . Here's a link to the old version that is still up - it's pretty awful.

The new version has been essentially ready to replace it since the beginning of the year, but a couple of things including the urgent need to produce public information about Covid-19 have, frustratingly, delayed it.

 

[Hutan]

The new version of HealthInfo is up, replacing the old version. There's a random 'CFS' that will be fixed and not everything is precisely as I would have wished but I think it's reasonable.
The illness names is ME/CFS. There are links to the CDC information, Emerge (@Simone), MEAwareness and the local patient group.
https://www.healthinfo.org.nz/index.htm?Chronic-fatigue-syndrome-CFS.htm

I'll be interested to see what you think.

Edit - for some reason that link isn't taking you to the page. If you click on the link and then search for CFS or ME, you can get to the page.

 

[Trish]

I'll be interested to see what you think.

I think it's a good, very basic, introduction to ME/CFS which should be pretty accessible to people of all educational levels and not frighten too badly newly diagnosed people.

Obviously it's just a starting point, and professionals and local support groups can provide more detailed input on what 'fatigue' means in this context, and more helpful guides on pacing.

 

[Hutan]

I think it's a good, very basic, introduction to ME/CFS

Yes, I do think HealthInfo probably underestimates the public with the level they pitch things at. But yes, there's probably not a lot of harm in that so long as there are links.

 

[Andy]

I'll be interested to see what you think.

I've only read the start of the overview section but it, as many other descriptions has, starts with fatigue as the main symptom. I understand why but giving that prominence over PEM remains a pet irritation of mine.

 

[NelliePledge]

Yes, I do think HealthInfo probably underestimates the public with the level they pitch things at. But yes, there's probably not a lot of harm in that so long as there are links.

There are many people in the public who struggle with written material for a variety of reasons. See this blog for more information from a content specialist https://contentdesign.london/reading/dumbing-down/

 

[Yessica]

Thanks Hutan for posting the link and yours and everyone's work on it! I took a quick look at it and the links. I liked what little I saw. I do want to read it better when I'm feeling better and have the energy to use for it.

Yes, I do think HealthInfo probably underestimates the public with the level they pitch things at. But yes, there's probably not a lot of harm in that so long as there are links.

There are many people in the public who struggle with written material for a variety of reasons. See this blog for more information from a content specialist https://contentdesign.london/reading/dumbing-down/

Great topic. Not to derail this thread. Perhaps someday when I have more energy will start another thread about this or someone else can. So much I can say and we probably all can about this.

Would love to learn more from everyone here about this. I'm still working on getting help for specific guidelines and changes here (in my country, state, and city) when I can and trying to initiate things with management in my huge shared space building to make it safer with covid.

Yes, I do think HealthInfo probably underestimates the public with the level they pitch things at. But yes, there's probably not a lot of harm in that so long as there are links.

I think NZ and some other countries the public is perhaps more intelligent (for various reasons).

My experience in my country with many people who've read the guidelines (and for businesses who use them) is there is harm in dumbing it down or being too sparse in information. Most don't go to the links or understand it further or think it out further. They take those few words at face value and don't dig deeper.

A few more words for more clarity and more precise words would help. This has been a huge problem where I live with Covid and also a problem with ME especially regarding those of us who are on the severe side and need people to know, understand and help.

Regarding if using more technical or harder for some to understand words, perhaps can have like wikipedia where you hover over the highlighted word and it gives a brief description and you can click further for more info.

Edit: edited out my edit and changed some words for clarity