The Route Map for ALD and AMN is a user led research project to create a repository of information and knowledge about two specific rare diseases.  This Route Map intends to provide a comprehensive resource to be used by patients, families and health and social care professionals.

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population.

Adrenoleukodystropy and Adrenomyloneuropathy are so “quite rare” diseases, as they affect 1 in 20,000.

When I started working on this project I knew almost nothing about rare diseases, like everyone else.

I have learned a lot from this experience and not just from a professional point of view.

I have realised that

being ‘rare’ is not always a positive thing.

A part from numbers and statistics, I have learned that patients affected by a rare disease and their families feel often completely alone  and isolated. Understanding their own condition and find specific information is very hard for them and sometimes they can’t even find the support of their doctors and specialists.

There’s a lack in terms of dedicated service, dedicated literature and poor understanding from the general public.

Being rare diseases they receive poor levels of support: it means poor support for patients groups dealing with rare diseases, very little funding for research on the social care practices for patients with rare diseases, lack of funding for scientific research for new treatments.

Most part of the knowledge, the support, the funds for these kind of patients derive from specific patients’ support groups, like the charity I am currently working with, which have been set up and are run by someone directly affected by the condition.

That’s why this work we are doing co-designing the Route Map (RM) for patients and families with ALD and AMN is so relevant and quite unique, as it represents the first tool to support patients with ALD and AMN.

We think the RM will have the potential to play a key role in personalised care planningfor people with these conditions. Moreover the co-design process has been a learning process for both patients and NHS professionals. The aims of the Route Map (RM) are:

• Improving the quality of care for patients with ALD and AMN
• Empowering patients and their families, expressing the potential contribution they can give to the NHS system
• Improving the quality of the relationship between patients and specialists
• Improving awareness of ALD and AMN

We are now prototyping the Route Map that will be tested soon with patients and NHS relevant professionals. But the first deliverable is now available.

If you think this is an interesting project and you would like to know more about the problems and needs of patients and families with these genetic rare diseases please download the Report. Feedback and comments are very welcome!

BTW: if you would like to know more about ALD Life, the charity dealing with patients with these conditions you can visit their website and decide to support them

• 1 in 17 people will develop a rare condition at some point during their life
• There are 30 million people affected throughout  EU
• In the UK 3,5 million people will be affected by a rare disorder at some point in their life time
• There are over 6000 recognised rare conditions each with different symptoms and prognose

from Rare Disease UK

Route Map for rare conditions is a project that Genetic Alliance is carrying on to design a map for patients, families and professionals dealing with genetic rare conditions.

The project assume a patient-centred approach aimed at the empowerment of patients and families to promote in them a proactive role.

The Route Map for rare conditions will be designed with an inductive method. 10 user-led groups are working to develop 10 maps for specific rare conditions.

I am pleased to work with one of this groups, with ALD Life, to design the Route map for the ALD condition.

“Many people living with rare diseases and their families have to go through years of medical tests and procedures before an accurate diagnosis can be made. Not only is it often a battle to get an accurate diagnosis, patients and families then struggle to find out the medical impact of a condition and how to manage it, on top of having to cope with day-to-day life without adequate support”

 

Alastair Kent - Chair of Rare Disease UK, summarising the findings or an interesting research.

So, enjoy the reading:

Ten Big Questions about the Big Society

…and if you are interested, don’t miss tomorrow Pat Kane lunchtime seminar at The young Foundation

“Deep down I felt, if the police had acted fast, Nazziwa would have her arms” – Nazziwa’s father.

Please, act fast! Send your messages to Nazziwa (via ActionAid) in time for International Women’s Day.

Spread the voice, thank you!

“For millions each year, 8th Mar is a time to celebrate the amazing progress women have made. Since the first IWD when people marched across Europe for women’s right to vote, work and hold public office amazing economic, political and social achievements women have been made. For ActionAid, it’s also time to shine a spotlight on the struggles women are facing today in the developing world and to build solidarity to tackle the urgent challenges ahead. We want to work towards a world where women and men, girls and boys have equally good chances in life, free from want and free from fear.”

From 18^th Feb the ActionAid website will feature videos, photos and blog posts from women facing serious injustices. This will  include the story of Florence who was kidnapped by Ugandan rebels, the Lord’s Resistance Army and was inspired by that event to stand up for vulnerable women. On International Women’s Day, these women will be taking to the streets and taking part in celebrations.

These are real women who face real struggles. Your messages will show them that they’re not alone in the fight for equality.

As a blogger I support ‘Get Lippy’ campaign!

If you are a blogger with a passion for women’s rights, join the campaign to drum up as much discussion, debate and attention as possible.

Generally, in standard service encounters, providers and customers perform according to clearly defined roles, while relational service encounters are mostly unmediated in terms of rules and scripts.

Talking about these topics referred to social design, I found that it is quite common to consider social services a matter of “relationship”. I’m not sure about this. In my experience I found that the lack of high “standards” is a typical limitation in the not-for-profit sector. Designing for behavioural change needs, instead, frameworks, strict methods and tools.

I have tried here to visualize what I am thinking about this topic within a Cartesian System. I have represented on the axis different levels of standardization and relation, from the lowest to the highest one.  In the 4 quadrants I determined 4 different kinds of front line staff, according to the correlation between the 2 variables.

I propose to use this scheme in order to classify all the aspects of the social design process: the user’s experience and the level of satisfaction, the effectiveness of behavioural change, the roles played by social service providers and users, the way in which they interact.

I individuated 4 different typologies of social services, as follows:

Thinking about how to improve social services through design techniques for motivation and behavioural change, I have realized that new standards are necessary in the non-profit sector. What I am referring to are: more adequate skills for social workers, effective tools, methodologies and procedures.

I would like to start up a discussion about these topics, starting from the scheme I have shared with you.

Do you think is it useful? Could it be implemented  in a better way? I’m working on it and your contribution is welcome! Thank you.

___________________________

Here are some resources and links:

“Service Design and Behavioural Change” Touchpoint Vol. 2 No. 1 – Service Design Network

“Relational Services“ Carla Cipolla and Ezio Manzini From the issue entitled “Interaction Design in Italy”

“Consumer Responses to Behaviors of Other Consumers in Service Encounters: A Script Theoretical Perspective” Li Miao Purdue University – Main Campus, Anna S. Mattila the Pennsylvania State University, Daniel Mount The Pennsylvania State University

If you are interested, this is a call for action for service designers, social designers and design thinkers. Stay tuned. Follow www.globalservicejam.org

Twitter account: @GSJam
and the hashtag: #GSJ11

I’m spreading the word…

First of all, thanks to all the participants (who contributed to realize a great work session) and special thanks to Marianna Recchia, who has the promoted this adventure involving a lot of passionate people with different backgrounds.

We started the Unconference with Alice Casey from Nesta (what’s better?) and she introduced many of the key concepts of the day (trust, motivation, involvement, third sector, neighbourhood, etc ). Together with Nef, I think actually they are doing some of the best work on the issue you can find around.

During the morning we collected different insights, listening to stories and experiences from many interesting speakers: we talked about work/ life time balance, time banks, participatory networking and so on. We had some participation from Greece and Finland too (for more details, have a look to the participants list in the wiki). During the afternoon we had an interview with Pazienti.org (an interesting case study inspired by the well known patientopinion.org.uk). We tried to understand more about their project’s background, looking at the motivations behind, the users involvement process, their business plan and the social impact they measure. They have just started their route but I think (and hope) they will walk for long!

So, the morning went on rapidly, and a real storm of concepts came over us! Just the time to have a Chinese lunch (we were in The Hub in the  Milan Chinatown) and we re-started briefing to summarize some concepts, individuate patterns and explore future developments. We started the unconference being aware about the urgency to introduce co-production techniques in the Italian service design model (a mission impossible someone could say! But we are fearless!)

We are very motivated to do something in this sense; something very concrete (many of us already do this in his own field of work or his neighbours) and something more oriented to facilitation, with the aim to support practically those who want to start up a co-production project in Italy.

Some thoughts about the method (the Unconference):

It was really good having co-produced the uncoference, having had a drink with the participants the evening before the date, having a multidisciplinary audience, having coffee break with delicious home made cakes

It was less good having too many skype calls, having not write down the expectations of everyone on a piece of paper, having strict time to chats, havin a rainy week end in Milan!

Now we are looking forward for the next step! (There are a lot of  good ideas floating around!)

Let’s keep in touch!

(More photos of the Uncoference are available here, thanks to Design Thinking Network)