Pics from Meeting 8/ 20.12.09

our first virtual meeting :)
[stephen: dublin, william: london, sara: lisbon, mia: beirut]

Notes from Meeting 7/ 14.12.09

[thank you stephen & william]

Overall we have to set out scenarios and begin the design process!
we have to look at the three ideas and come to a better and stronger concept for each.. not develop fully.

From the top... (bit rambling but you'll get what they mean if you look at the last post

Universal connection
Inclusive design
cool aesthetics
plug sort of same

Type of pain relief
how to deal with pain?
what get to brain faster?
rubbing hugging?

sceanerios? how to develop ideas


Pure ideas
magnets hand bag
specail magnt conductors - chi locations
limited mobility - inclusive
power - how to stay closed

D90 Skull helmet
impact makes it rigid

look good
new opportunity
out do the button

zip together magnets

how to put in fabric?

Digitex (fabric brief) RSA
digital fabric

mobility study - most dexterous (does closing stuff really affect them?)
push it - design - new feedback

we need to develop ideas further to make a better judgment.
That's not to say we have to bring all three to the same development stage; we can disregard/dispose as we go along.

Notes from Meeting 5/ 6.12.09

1. Clothing Accessories
Magnets, stretch material and velcro
Given in a pack to a tailor with users clothes for adapting.
Develop instructions and actual accessories

There were other ideas in this area but they all fall into this main concept.

2. Day to Day - Plugs
Simple magnetic adapters for plugs to allow dis/connection.

This 'day to day' task falls into another group of ideas; this being
the most simple and direct.

3. Pain Intervention
A wearable garment that has the ability to administer therapy/ies
when needed.

We were focusing on the hands; using heat and pressure. Following
on, that the same model/concept could be further developed for best fit
other parts of the body. This we feel is our strongest and most relevant to the

These are the main areas that we have formed ideas around the research.


Pics from Meeting 5/ 6.12.09

Interview 3

Female, 56 , OS

Key hole surgery on shoulder.

Walks a lot.

Stays active.

Interesting Pain comment;
"if you suffer from chronic pain, you forget about it..."


Interview 2

Female, 46, RA ( In Remission)

Diagnosed at 24.

Hospitalised at an early stage for 3 weeks.

10 years of gold injections.

Interview 1

Male, 58, Irish

Plays Golf and Music (Banjo)

Sharp pain in fingers when hitting the ball or gripping the golf club.

Referred by GP to get x-ray.

Cold affects the level of pain.


Patients Jouney - Conclusions

Common facts:
  • First appointment is always with a GP;
  • All referred to a Rheumatologist consultant;
  • All diagnosed with RA after Blood tests;
  • Rheumatologist always ask for more blood tests and x-rays;
  • Follow ups by GP and Rheumatologist;
  • Constant Blood tests after being diagnose with RA;
Less common:
  • Being introduce to a Rheumatology Unit;
  • Received more than leaflets about some medications;
  • Times are different from patient to patient;
  • Different monitoring programmes;
  • Different disease progress;
  • Sometimes Other diseases are diagnose;
  • District nurse and Care nurse are introduce in extreme cases;
  • Methotrexate - can be taken orally or administered by injection (most common medication).

Patients Jouney - V

Patient V // Symptoms started after gave birth

Patient Comments:
  • First GP very helpful (but didn't diagnose RA);
  • Second GP good but not particularly "clued-up" on RA (saw this as a "old-age" disease);
  • GP's didn't have knowledge of medication being prescribed;
  • Current GP has a specialist interest in RA (wonderful);
  • Well informed about RA (from father's experience);
  • Meant to have hydrotherapy (didn't happened);
  • Since being prescribed Etanercept has experienced improvements.

Patients Jouney - IV

Patient IV // Symptoms due the nature of work

Patient Comments:
  • No advice offered other than leaflet on Methotrexate;
  • Wish more information on diet, life style;
  • Own research. Mainly via internet;
  • Concern about reliability of some internet resources;
  • Not warned that fatigue as part of symptom;
  • Discussed the issue with the employer;
  • If becomes bad was agreed to start work from home; (happens one time)
  • No adjustments have been required at the workspace.

Patients Jouney - III

Patient III // Symptoms started after lift a heavy parcel

Patient Comments:
  • Good education programme at the hospital;
  • Partner able to provide support at home;
  • Active exercising (walking, bicycling, etc.);
  • Basic information leaflet supplied for drugs.

Patients Jouney - II

Patient II // Symptoms started after a traumatic and stressful situation (husband died)

Patient Comments:
  • Mother suffer from severe RA;
  • Big improvement after only 2 injections of Enbrel;
  • Although a lot of damage had already been done to hands, fingers, toes and ankles;
  • Able to self-inject after being teach by the district nurse;
  • Took a Hydrotherapy course. First at the hospital and after at a fitness centre;
  • Still attending the gym;
  • Started to visit the local NHS Chiropodist every 6 weeks (because she started to be unable to cut toenails, etc.).

Patients Jouney - I

Patient I // Symptoms for 24 years before being diagnose

Patient Comments:
  • Happy with the information given by GP and Rheumatologist;
  • Get a lot of other data from internet;
  • No extra help offered;
  • Unaware of other services (like RA nurse);
  • Used the NRAS helpline.


interview with stakeholder (best friend of sufferer) 29.11.09

sandra | diagnosed with Rheumatoid Arthritis at age of 9 (juvenile?), now is 25
(used fake name here on blog)

- young.. aware of what's happening in the world in terms of science and research so sees a correlation with ways to decrease symptoms and pain.

- at 22, started a new treatment 'anti TNF' (antibodies against inflamatory..) so feels much better but still had deformed hands and feet.

- but recently underwent surgery to fix that. and what able to run for the first time! and wear new shoes that looked normal.
did the operation privately (save up for it) to have it done between her law degree and her new job (see below). She did not want to wait years for the NHS and the time factor was important. also because her mom (teacher) would be off of work.

- after the surgery. she started talking about her arthritis and was more open about it (more comfortable, and feels better..)

- she remembers that when they were young and went touring in Italy to sing, her friends symptoms of pain would be worse.

- loves music, singing, playing the piano. she adapts the music to her fingers, because she can't reach an octave.
[special piano with special keys?]

- says that she can't do open windows on a damp night

- always had to be careful about weight and diet.. because she can't move for excercise..
no diet seemed to work! according to hannah (the girl i interviewed), at one point her diet was eating rice and maltesers only! :s

- she is not week, but feels embarassed.
wants to feel like she can do it all on her own. "i can carry my bag!"
doesn't like it when people baby her
but hannah now no longer asks her, and automatically carries her bag...
she does it before talking or asking so that it doesnt come up.. and acts normally about it
[role of good friends!]

- at school, she used to type everything

- has a special hand break and gear stick in her car

- currently works in a law firm and worries alot about what they think of her.
slow writing.. "theyre gonna think im not good enough"
"they all look clever and beautiful and in high heels, but i can't"

- at work: know her case - gets special care - special desk & seat - check up on her..

- likes to be integrated with society and be with everyone else. not isolated or in a special place.
not dwelling on it but getting on with things... talking to people..

interview with stakeholder (family member of sufferer) 29.11.09

grandmother| diagnosed with Osteoarthritis [started with knees, then shoulders & hands] at the age of 75, now 91

- first went to see the dr. when she couldnt kneel on her knees when tidying up low cupboards because of pain.

- prescribed with inflammatory drugs & swinging exercises for the knees.
- hands became progressively more stiff as she had to use them more. (also loss of sensation)

- likes wearing jewelry! but hard to put on necklace, so her family adapted them to open/close using magnets
- enjoys going to family lunches and gatherings, and always likes to try and look her best. when she wanted to put jewelry on she asks her grandchildren to put it on for her.
- can't have day vs. night clothes, so uses a lot of accessories to create different costumes. ex: beads, scarves, brooches..
[here interesting to add magnet idea to clothes, buttons... also can bring in the copper/bacteria idea... for article on copper bracelet click here]

- very hard to button/unbutton her clothes. can't get dressed on her own. needs help. has a carer.. but always appreciates it more when her family help her out instead.

- loves writing! used to write a daily diary, but can't write anymore... sometimes forces herself to write a cheque & birthday cards..
she was thinking of ways that could help her grandma to get back to her diary... ex: recording, voice memoire..

- constant topic:: the grandmother talks a lot about her symptoms and her feelings.. the main discussion happening would be how she slept/ level of pain/ ..
she is sad & annoyed about her OA and misses being independent.

- misses walking around the supermarket/ something she can't do anymore

- a bad day for the grandma would be when she can't sleep properly because of pain.. never comfortable.. no perfect position to be comfortable..

- would rather struggle than sit in her wheelchair

- she loves her special walking stick that can be folded into her bag and has an ivory handle..

- things also mentioned in the interview: velcro shoes, elastic skirts, 2in1 walker+tray, 2in1 umbrella+walking stick

Notes + Pics from Meeting 4/ 24.11.09

- subtle mechanisms
- equipping individual
- communication. people are insightful!
- innovation/lateral thinking/ disecting/ thinking around the problem
- priorities. mentally active- staying positive
- support - dealing with it - taking each day as it comes - being ready

Q's for patients:
- What is a bad day? How do you get through it. (what gets them down)
- Who supports you?


Experience Project

A platform where people share experiences.
It's interesting to read how people with arthritis describe the disease.

  • "... my legs were completely stiff i literally had to waddle around ( quack quack waddle waddle if it rains all day we'll act like ducks )...
>>> Experience Project link <<<