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Patients – and research partners

Carina Andrén, 47, from Stockholm is a former clerk and mother of two children. One morning in 1989 she woke up with severe pain in her feet. — It hurt so much that I couldnt stand up and I had no idea what had caused it. My first thought was that I perhaps had danced too much the night before, she says, but this turned out to be the dramatic start of my illness.

For the next ten years she was unable to work.
— With two little children and a newly bought house life could have become very difficult but I never gave up or became depressed. I just forced myself to focus on other things in life than work and career. How to manage to walk to the shop to by some food, for example...
Carina says she was lucky to get good medical care from the start.
— I have had only two doctors in these 20 years. Wherever they went in their careers I followed them, she jokes.

Since 1999 she is feeling rather ok. Her symtoms are under control and she is able to lead a normal life. After some courses in medicine and pedagogics she started to work as an RA-instructor/coordinator for the Swedish Rheumatism Association and was later appointed as a leader of the RA-instructor programme. I also worked for an american company as a ”patient-partner” but my main task for many years was to train medical students and doctors in the primary health care to identify RA by teaching them to recognise early symptoms.

Being a very keen and active patient Carina Andrén has also participated in many studies.
— It has always been very important for me to know as much as possible about RA. By now I can definetely call myself an expert on my own disease. When professor Staffan Lindblad at the Department of Rheumatology at Karolinska Institutet (an AutoCure partner) last year offered her a job as a permament ”patient-representative” she immediately said yes. — My main job here is to find new ways to improve the logistics and to create tools for the patients so that they can become more involved in their own treatment. As a patient you want to participate, to be listened to and to be respected as a person with great knowledge of your own disease.

One of Carinas first achievements on the new job was therefore to develop and inform about a new internet service for patients, where the patient enters details about his or her health status before seeing the doctor.
— All you have to do is to answer questions by pointing at a touch screen, you dont need to have any computer skills. This register makes the appointment with the doctor more efficient and it helps you to be more in control of your disease and involved in the treatment. It also serves as a very useful database for the doctor, says Carina who hopes that this system will be implemented everywhere eventually.

Her position as an ”expert patient” or ”patient expert” is highly respected by her medical colleagues and she is used to answering all sorts of patient related questions in the corridor or in different work groups.

— My network of around 100 RA-patients from my previous job is of great use here. Their opinions are very valuable.
She also engages in seeing to that formulas and applications are as simple and comprehensible as possible and she strives hard to keep her self updated on the research front, not least on what is going on in the AutoCure consortium.

— I think my presence here is a quite useful resource, every hospital ought to have patient representatives.