Evidence Informed Practice in the Design of Services

I’m currently sat at Stockholm train station en route to ServDes – a service design and innovation conference taking place this week in Linköping. Tomorrow myself and Ferg are running an unconference session, we’re hoping to talk to people there about what they consider evidence to be and how they use it in their practice. Obviously this is related to work, but it’s also a genuinely fascinating question. Last week we started asking people on twitter what evidence meant to them. The responses we’ve had can be seen here, they’re great, really diverse and wide ranging. If you’d like to take part please feel free to tweet with the hashtag #servdeseip what evidence means to you. We’re hoping to tweet the session tomorrow so be sure to check the hashtag or our twitter streams @georgejulian or @fergusbisset to see more.

You can learn more about the conference, including some of the other unconference sessions outline over at http://www.servdes.org – there are some really interesting sessions, I’m a tiny bit disappointed that we are running a session and can’t join one of the others! You can also see the main conference papers here and check out the snow on the webcam here.

Our session outline follows – please do join in.

What we would like to share with you?

We hope participants will be interested in debating what counts as evidence, sharing how they use evidence in their own practice as well as discussing the ethical implications of not using evidence as part of their professional practice. This discussion will offer insights into how we can all best use evidence to improve our professional practice and to support the design of services in a way that will measurably improve people’s lives.

In true UnConference style we do not want to present or structure the day too much, presenting you an opportunity for discussions specific to your own sector and the use of evidence in your own practice.

Is this session for you?

We hope that people will feel able to drop in and out of our session (Room 5) and offer their input throughout the day. Our only request is that you come with your own views and experiences and are willing to share them – we are looking for debate and discussion and do not claim to have the answers ourselves. We do not expect anyone to have any specialist knowledge about evidence, research, health or social care or even design…but if you have an enthusiasm for reflecting on your own experiences and those of others or experience and interest in the way people evidence their personal and professional practice and experiences, we’d be delighted if you joined our session at some point throughout the day.

What do we do?

We are both currently involved in promoting the use of evidence-informed practice in adult health and social care in the UK at research in practice for adults. With a focus on knowledge transfer and knowledge creation, co-production and knowledge exchange, ripfa offer an eclectic range of approaches and organisational experience in empowering people to understand, create and use evidence. We would happily introduce these and specifically the Change Project model, an innovative method for applying research, building research capacity and empowering both personal and organisational behavioural change.

How to participate

If you are at ServDes please do come along to see us in person, otherwise please do get in touch via twitter. We’re going to be using the Twitter hashtag #servdeseip, so feel free to follow that or check in occasionally on our mini-site http://www.ripfa.co.uk/evidence-informed-practice-in-the-design-of-services/latest-updates/. We will update the mini-site with the preparations for, progress of and reflections from the Unconference session.

Who are we?

Ferg is a social designer with a particular interest in motivation, behaviour change and winter sports; George is a former academic and researcher with a passion for evidence, honesty and cake.

Cancer – the cost of no cure

This blog post has been a hard one to write as it has forced me to address, and now to commit publicly, how I feel about cancer treatments and cost effectiveness and rationing. This post ends in a reflection that I suspect some people will struggle to comprehend about my fabulous Dad.

Context

This week the National Institute for Health and Clinical Excellence (NICE) published final draft guidance appraising the use of Avastin (bevacizumab) in combination with chemotherapy (oxaliplatin and either 5-fluorouracil or capecitabine) for treating metastatic colorectal cancer. The guidance does not support the use of Avastin. This has been met with uproar from campaigners and cancer support charities and has received considerable media attention. Bowel cancer is one of the most common cancers in the UK, and it affects nearly 40,000 men and women each year; despite the fact that if caught early it is highly treatable it is still the second most common cause of death by cancer.

The facts

NICE use QALY to judge the effectiveness of treatments. QALY or quality-adjusted life years measurements give an indication of the number of extra months of life of a reasonable quality a person may gain as a result of the proposed treatment. When considering cost effectiveness the QALY score is compared to the cost of the treatment – the cost of using the drugs to provide a year of the best quality of life available. From this a judgement is made about cost effectiveness. You can read more about how QALYs are measured and used here.

Avastin is manufactured by Roche. They estimate “that approximately 6,500 people per year might be eligible for the drug and, with the proposed patient access scheme, Roche is currently asking the NHS to pay around £20,800 per patient. If all these eligible patients received bevacizumab, the total cost to the NHS could potentially be as much as £135 million per year“.

The cost

Research has shown a drug costing £20,800 per patient can give an extra six weeks of life.

The reflection

My Dad is terminally ill with cancer. He was diagnosed with cholangiocarcinoma (bile duct cancer) three years ago and given three months to live. He has exceeded all the odds with the help of surgery, chemo and the most cast iron determination not to give in yet. If you want to know more about Dad’s situation just search my blog for cancer. There is no cure now Dad’s cancer has returned. The reality is that this is likely to be his last Christmas (none of us are even considering that he might not make that), he may not live to see his granddaughter’s first birthday in March, we are all having to adjust to the thought of life without him around. I can not begin to explain how hard that is.

That said, he is dying, nothing can stop that. In my Dad’s case further chemo may give him extra time but there are no certainties and it would only delay the reality (Avastin isn’t a treatment option for him). At the moment Dad has decided not to have chemo as there are no guarantees and he is keen to keep the quality of life he has for as long as he can; the option remains open to him and he did say this week that he might consider it after Christmas. I suspect that there is something about the human spirit that means when faced with the situation yourself, the overriding instinct is to keep fighting, in any way possible. I will of course support whatever action my Dad chooses to take, although my sense is that quality of life is more important than quantity and that chemo might not be the best choice, but that is up to him.

So what has this got to do with Avastin. I guess I feel that NICE have made the right decision. Avastin offers no cure, it just buys time; I really understand how important time is, and I understand that in exceptional circumstances there might be a case for that time being worth fighting for. However I also feel that the NHS has limited resources and we all have a responsibility to recognise that. I strongly feel that people complaining about the NICE decision are missing the point, it is Roche that set the price of Avastin and all NICE are doing is using the best available evidence to make honest and transparent decisions.

My family are living the heart-wrenching cancer reality at the moment, that doesn’t mean I don’t understand NICE’s decision and while I appreciate how hard a reality that is, I don’t think if it was my Dad an extra six weeks would warrant a cost of £21k that might also provide ongoing support for someone else. The NHS has limited resources and I have real concerns as to how they will be shared given the planned demise of NICE and the new rationing role for GP consortia, it will take a strong GP to refuse to bend to the emotional pressure of a patient, their family and the media. I will stand by any treatment my Dad chooses but the reality is that there is no cure and all the money in the world won’t change that.

Professional Social Work?

Community Care are running a story today that reports on a survey of practitioners conducted by the College of Social Work that found “Most social workers would not pay more than £50 to join the College of Social Work”.

The College, recommended by the Social Work Task Force last year, is charged with improving the Social Work profession through five functions:

• providing a strong voice for, and leadership to, the profession;
• defining the values and purpose of social work;
• developing, upholding and supporting standards;
• providing guidance and support to the profession; and
• shaping training and development.

Most professions have professional colleges or bodies that support this sort of work. Most professionals pay registration fees to a national college or body. In fact a quick bit of googling revealed that professionals pay the following: teachers pay £36.50 per year, psychologists pay £110 per year, accountants pay c £220 per year, occupational therapists pay c £250 per year.

So I appreciate that there is a range of fees paid depending on profession but my personal view is that if Social Workers value their profession then they may just need to pay to preserve and promote it and £50 a year really isn’t going to go very far. That said, I agree with many others who have been commenting that for many people the College’s offer is still not clear – and who would offer money without knowing what they’d get for it. Guess time will tell.

Never was so much owed by so many to so few

Today is 11 November 2010, remembrance day. I’m on my third poppy this year, just don’t seem able to hold onto one, not that I mind as I think the Royal British Legion do fabulous work and deserve every penny they get. I’ve written about my thoughts on service personnel before Respect please! if you are in any doubt about the role they play you can read it here. I’ve also written a little about my grandad’s experience’s in a post on VJ Day here. Since World War 2 there has only been one year when no service personnel have been killed on active service (1968) so there are lots of families out there who are living with the consequences of conflict.

The Royal British Legion appeal this year features Emma-Jayne Webster whose fiancé died just over a year ago and Gunner Mark Stonelake who lost his left leg two years ago in Afghanistan. They have both received support from the British Legion, along with 10,000 veterans of operations in Iraq and Afghanistan since 2003. If you wish to know more about the British Legion and the £62million they raise each year to support veterans then you can watch a short video here. It starts with a quite haunting soundtrack, about a minute in, recorded live on exercise:

Final words go to the big man, Winston Churchill: