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THE POWER OF patient advocacy was the recent focus of The Journal‘s Open Newsroom event in which I took part.
For those of us who work in patient advocacy, we hear a lot of rhetoric about the ‘patient revolution’ that is re-directing healthcare towards patients’ priorities, as well as empowering individuals’ to be more involved in their treatment and care. However, in Ireland, this rhetoric is not yet matched by the reality.
I came into patient advocacy work because of a desire to improve how the health system meaningfully engages with all patients in Ireland. I have seen advances in recent years and through IPPOSI (Irish Platform for Patient Organisations, Science and Industry), I’ve seen the creation of a number of opportunities for our patient members (both organisations and individuals) at the national and international level.
For me personally, the ‘patient revolution in healthcare’ will only be fully realised in Ireland when it is viewed through a rights-based as well as a person-centered lens. This means supporting efforts to promote patient engagement alongside patient advocacy.
Three things need to happen as part of these efforts:
The use of human rights-based approaches have been called for by HIQA and in a recent perspective by patient advocates. As part of these approaches, it is essential to see patients and carers as part of the healthcare workforce. This means creating meaningful, supported opportunities for patients in decision-making across all levels in healthcare – national, regional and local.
In the UK, in its updated guidance on embedding shared decision-making in organisations, the National Institute for Clinical Excellence (NICE) recommended the appointment of Patient Directors. Coming from a ‘healthcare service user’ background, these individuals are to be responsible for “raising the profile of the service user voice in planning, implementing and monitoring shared decision making, especially from those in under-served populations”.
Equivalent Patient Director roles in Ireland would be game changers, playing a vital part in reforming our health system toward prioritising partnerships over power, involvement over exclusion and relationships over reputation. These roles can open up adaptable, inclusive approaches to patient engagement, across areas such as service design, quality improvement, clinical governance, oversight and audit, as well as training and change management.
These patient directors can work in close collaboration with clinical and nursing leadership. In 2018, the HSE established the Office of the Chief Clinical Officer (CCO). In 2020 the Department of Health created the Office of the Chief Nursing Officer (CNO). In 2022, we are likely to see the appointment of two new Chief Medical Officers (CMO) in the Department of Health.
An obvious ‘win’ would be the establishment of an office of a Chief Patient Officer (CPO) that traverses both policy and service delivery, and coordinates the embedding of patient engagement and advocacy as part of shared decision-making across the entire public health system.
Working together, this represents a massive opportunity to bring a level of coherence, oversight and accountability into all aspects of patient engagement and advocacy in the Irish public health system.
Seeing patients/carers/advocates as part of the workforce also means remunerating patient advocates appropriately. The Department of Health and the HSE have been working to develop a policy on remuneration, together with a roadmap for meaningful engagement – neither of which has seen the light of day. These need to be published and implemented as soon as possible.
Empowering healthcare professionals
As witnessed by the controversy last year over the draft Sláintecare public-only consultant contract, doctors in Ireland greatly value their autonomy to advocate on behalf of their patients. However, healthcare professionals are not currently trained in other aspects of patient advocacy – namely person-centered approaches to care, including patient engagement theory and practice.
As part of the current root-and-branch reform of education and training of doctors and other healthcare professionals, we need to create roles for patients as educators, whereby the learning environment can support a culture which seeks to engage patients in the exploration of their condition, care, and desired outcomes, as well as promote shared decision making.
This includes evidence-based training on how to meaningfully engage with individuals, their advocates and patient groups, learning from good practices emerging from health research, quality improvement and other fields.
Patients as part of the reform agenda
The patient community, as well as their representatives have warriored for years, for themselves, for their loved ones and for their patient groups. For many, all they have is the independence of their voice, so battles are better fought ‘from the outside’. Equally, many of us know that genuine, ethical, sustainable change can only come about through patient-led partnerships both ‘on the inside’ and together with other health stakeholders.
Most ‘reform agendas’ in healthcare are not seen by patients as something that is ‘their agenda’ but is something they need to go around, rather than be part of. Sláintecare, with its (now defunct) public engagement programme was making inroads on this before it was pulled as part of last year’s ‘reimagining’ of the programme. This decision needs to be reversed through innovative, inclusive engagement approaches with patient groups and the public.
All revolutions need leaders. Realising the patient revolution needs patient leadership, which can come from many sources and backgrounds – people with lived experience, advocates and carers, patient groups, as well as healthcare professionals and administrators.
However, it can only happen if the service and the system has the capacity to engage in an inclusive way and embed the voices and perspectives of the very people it seeks to serve. This, I believe, will transform healthcare in Ireland from something that is ‘for us all’ into ‘our health service’.
Derick Mitchell is Chief Executive of the Irish Platform for Patient Organisations, Science and Industry (IPPOSI)
This work is part of The Good Information Project, which is co-funded by Journal Media and a grant programme from the European Parliament. Any opinions or conclusions expressed in this work are the author’s own. The European Parliament has no involvement in nor responsibility for the editorial content published by the project. For more information, see here.
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They’ve already broken promises. This programme isn’t worth the paper its printed on. FF and FG have a track record of disregarding programmes and doing business as usual for the 1%.
@The Risen:
That’s actually laughable coming from a person who voted for Sinn Fein.
@Just Some Guy: I voted for PBPs Gino Kenny, but nice try (not)
@The Risen: shinnerbots are going into meltdown…you hate to see it ;)
@The Risen:
You certainly put me in my place. People Before Profit? The same party who organised protests when people couldn’t give their loved ones a proper burial because of COVID
@Just Some Guy: Just correcting you.
@The Risen: an honourable hard working man by all accounts. Lucky to get elected, if I remember correctly., after being caught in the SF up swing.
@The Risen:
You are very confused politically.
You supported a extremist right wing conspiracy theorist for President. You say you voted for an extreme left wing candidate in the General election, and you spend every waking minute advocating for Sinn Féin on the Journal. On top of that you have no idea how our democracy works.
It’s very hard to take you seriously.
@Feardorcha Ó Maolomhnaigh: whatever else about The Risen, the broad support for his comments on here indicate that a hell of a lot of people ‘take him seriously’.
You? Not so much.
@Diarmuid: that doesn’t say much about the people on here does it? His statements are total rubbish. And speaking as someone who voted for SF they do far more harm than good. They make SF voters out to the total muppets
@Just Some Guy: from a faceless account you’re the one that’s laughable
@Diarmuid: It is very funny how you and @We love Katamari: respond to defend the Risen. It’s just like you are a little team.
I wouldn’t put too much credence into the number of thumbs on his comments. A little team of posters can easily manipulate the thumbs up on any comment.
@Shazam37: Most of your posts involve insulting people. Now you’re insulting the ‘people on here’. Well done.
@Jim O Brien Tech: god.
You people.
@Shazam37: What’s childish is you calling everyone who you don’t agree with idiots and morons. This is a comments section, not your tree house.
@Shazam37: He posts no more nonsense that the rest of the Sinn Féin posters on here. You included. If the murder of 1800 people doesn’t damage a brand, then your, Dermot’s or the Risen’s comments aren’t going to make it any worse.
@The Risen: I see your pants are on fire there Risen! SF Bot#1
It’s time to play the music
It’s time to light the lights
It’s time to meet the Muppets on the Muppet Show tonight
It’s time to put on make up
It’s time to dress up right
It’s time to raise the curtain on the Muppet Show tonight……….
@Sinead Ni Coscraigh: So, reduce our options in relation to the import of liquid natural gas and so increase the cost of gas (quite clean compared to oil) and increase the import of oil. Makes no sense. While increasing dependency of imported gas from the Uk, using our uk gas inter-connector, under threat of tarriffs due to a pending hard brexit. hmmm.
@Sinead Ni Coscraigh: ladies and gentlemen I give you the Gruesome Threesome, staring Mehole Martian, Leonardo Veruka and Smiley face himself Amen Rie Anne
@a politicians promise is as good as a lie: I wouldn’t pursue a future in comedy if I were you
It’s ok. All promises will be broken by the end of this year.
@Madra: by the end of the week even!!
@Madra: yep they will blame it all on covid 19
@Madra: what’s this baby box for new parents?
@Madra: except any that involve taxing us more. Did they need the greens that much that they gave them so much? So much nonsense in this I’d consider voting SF next time just to end this nonsense. They should’ve held another GE.
We’ll have a crowd that only 7% voted for dictating what kind of house we get to live in, what kind of car you are allowed to drive and how much tax we have to pay for the privilege. There’s no doubt that the greens are serious bad news especially for anyone living in rural Ireland who wants to stay rural.
The only good that can come out of this is that they’ll fail so spectacularly they won’t be able to form a government next time between them even if they bring labour and the soc dems in
@Quiet Goer: Car tax in East Eu is 50 euro per year driving whatever you want eg. latvia etc. About 200mnl people in East Eu….so our tiny country…
@Damian Moylan: Citroen c5 in Ireland over 700 euro, same car in Spain 30 euro. It’s nothing to do with climate change or the environment it’s about revenue
@Damian Moylan: Ireland has one of the highest standard of living in the EU. The average wages in Ireland are over 4 times that of Latvia.
@Feardorcha Ó Maolomhnaigh: so what? We should have fraud taxes foisted on us by a party no one voted to make Kingmakers ? And worse, FG/FF went along with it ??
@Damian Moylan: You drive a car with low emissions you get low tax….its called carrot and stick approach.
@Feardorcha Ó Maolomhnaigh: tell that to all the homeless and the thousands waiting for life altering operations and the disabled
I’d have no problem if this was actually going to happen, the carbon tax increase is all that’s gonna happen :( smhhh
@Steven: Electric cars would work if we had nuclear power stations. Berlin using electrically powered buses for a long time already but Germany has a large number of coal fired power stations with carbon capture.
Not what People voted for. I’ve had it with FF,FG,LAB, and greens. We can’t wait 5 more years for housing and we can’t waste any more money on stupid Ill thought out and overpriced projects ie the children’s hospital. People voted for a left government to fix housing and overpriced rent as well as reduce cost of living. How are two parties filled with landlords going to fix housing? It’s a joke.
@Ciaran Burke: Jesus. SOME people voted for that. SOME people. Don’t you get how government actually works.
Christ. If you can’t grab this nuance YOU are the problem.
@Ciaran Burke: They have a majority of the seats in the Dail. What’s your point?
@Ciaran Burke: As a FG voter in last election, I’m really disappointed that they’ve chosen to sell out to the greens. Personally I’d prefer to have done a deal with SF as no matter how crazy their policies seem it ain’t nothing like the futility of the Green policies.
I expect FG and in particular FF to loose a significant amount of support in rural ireland as result of this.
@Shazam37: No I get, it SF is at fault for not running enough candidates. I personally am a centre left voter. I almost always vote left independent to get away from this my party made me vote this way nonsense. It’s very clear what was voted for, change. It’s not nuance it’s a slap in the face. Look I understand people vote for their own interests that’s fine but can we really take anymore of the same? I mean the children’s hospital really annoys me the sheer waste of money & the printer.
@Thomas O’Donnell: We both know this Frankenstein government has no real mandate & lost the popular vote. LV 5th count, MM 6th count and still has to go to Ardfheis for approval. Are you okay letting SF lead opposition into the next GE because if there is no change it’s probably a SF gov next time.
@Seamus Hughes: I agree as I said above I would be a left independent voter. The greens if they do this will shaft themselves. And rural people and farmers in particular do not like the green party because it’s bad for them economically. This will allow SF to tie FF and FG together and with labour no longer a threat it will allow SF and the SD to rise in the next election. I personally favorite coalition governments so there’s a check on the power. But, this combination it’s all wrong and Eamon Ryan in particular should know better after his last coalition with FF. I would not be in favour of Sinn Fein alone having power I feel there needs to be a check but their housing policy is popular something needs to be done on housing.
@Ciaran Burke: it’s not SF fault. Why should they run loads of candidates? They did poorly in the election before and terribly in the presidential election. They ran the candidates they thought appropriate based on the info that they had. They don’t have a crystal ball.
The nuance is that nearly 50% of the country voted FFFG, that’s inescapable fact. That it was a remarkable election that saw a further damaging result for the established two can’t be denied.
But it CANNOT be claimed that the majority of the country didn’t vote for this. They did. Wishing we won’t change it.
I voted for SF Soc dem green. I loath. LOATH. FFfG. The waste. The incompetence. The cronyism’s. The lack of accountability.
But that doesn’t change the simple fact that although more people than ever want change, that’s is NOT the same thing as saying a MAJORITY do.
@Shazam37: because everyone knew with the confidence and supply arrangement that people were looking for an alternative. I said before the election SF are shooting themselves in the foot not running more candidates. Also the fact RTE pushing SF out of the leaders debate also pushed the anti establishment sentiment and the scandals in government as well as nothing been done on housing were huge issues. The last election was on housing.
Some good proposals, as with any government expect at least 30% not to be done.
Given current situation the transport changes make total sense. We want to encourage more people to safely walk and cycle. More people doing that means less cars, less pollution and less traffic.
@Barry: yes the transport proposal look good. Long overdue. The cycle to work scheme should be extended to self employed and a version of it made available to retired people.
@Barry: Well that won’t work outside the m50.
@Damian Moylan: why is that? Those who live around 10km from where they work and where possible should be encouraged to cycle.
Be sold a pup, come to mind
Looks like an excellent programme. Great to have a gov in waiting with no sf involved. Phew!!
@Fionn Darland: get a life
@Fionn Darland: folks I’ve noticed this lad, is fishing & winding people up, don’t fall for it, a troll, just move on, don’t entertain him, if I say the sky is blue, this lad will disagree & say its red, ignore
@Fionn Darland: And you think all that will be implemented? You’re fierce optimistic altogether.
@Looney Tunes: of cours he is. Loser.
@Shazam37: I have a life but unfortunately 1800 in the North no longer do thanks to a certain organisation that is/was the second cheek of the same SF ass. I have no issue at all with legitimate left wing parties.
@Looney Tunes: So I gave a bit of a ribbing to Liverpool fans saying that their 2019/202 win will have an Asterix beside it. I am not a Pool fan – get over it – it was a bit of fun – do you have a sense of humour?
@ Badger: No harm in being ambitious! IF they implement the plan a lot of the issues that came up at the last election will have been addressed. Time will tell but only if the grassroots of all 3 parties approve of it!
It’s time to play the music
It’s time to light the lights
It’s time to meet the Muppets on the Muppet Show tonight
It’s time to put on make up
It’s time to dress up right
It’s time to raise the curtain on the Muppet Show tonight……
@Sinead Ni Coscraigh: I don’t accept that.
I must have missed the bit where they said they would reduce their salaries like New Zealand.
No change there so. Its as we were.
Words. Only words. We need actions.
If you’re reading this and thinking “great”… or looking forward to seeing this in action… then you are either thick or there is something wrong with you. Have people not learned from the last few years under FG?? Have people not learned from what happened last time FF had the reigns? And now, somehow, together it’ll be grand?? This will be a clusterf##k of a s##tshow of epic proportions.
Lots of nice aspirations but very few specifics in the key areas of housing, health and dealing with the insurance problem.
It seems generally like a continuation of the last government but with some concessions on carbon tax, drug policy and transport to the greens. Have FF had any impact on this at all?
Seems you don’t have to get in on the first or second count, or even the sixth count , and can still run the country.
They couldn’t run a car never mind a country.
@Jim O Connell: Finally some Shinner who accepts facts!!! Yes its true once you are elected to the Dail it makes no difference what count you got in on
Any plan not to pump runny sh!te into the sea
Should have made it illegal to remove hedges and trees and to destroy rivers with proper enforcement- hopeless at the moment.
Least they havent taxed vaseline……cos we will need it when these cabbages and their ilk start taxing and charging us to the limit
I totally hate the Green Party I wish they would get a big grip on what they are saying . Will they pay each household for their changes I bet not so we wont follow them either ?
I just wasted 7 and a half minutes reading that load of donkey dung every word is lies. I wish we could trust the people involved but alas they have proven themselves to be untrustable. Batten down the hatches and prepare to be buggered by FFFGGP.
2050 is too late for the planet. Next 10 years are crucial. Flip we are screwed.
@Lucy Legacy: you mean were screwed if we let this ‘programme’ comes to happen.
Transport greens would love us to go back to the oul horse and cart what a backward shower of prats
They have no money but borrow to pay for contraception is lunacy.
Not using fractured gas but supporting oppressive regimes in the middle east by buying their oil and gas seems to me like a bad idea.
Plan loaded with regressive carbon taxes to subidise Telsas for green supporters with carbon tax on pensioners coal. Amazing what you can do when media, all politicians and scientific organisations refuse to examine the Data supporting the climate change scam.
have your say