How to research oneself?

During my career as a biomedical researcher in the field of orthopaedics and biomechanics, I’ve made it quite clear to my colleagues what I like to study, and work hard to keep an objective mind when doing my work. I have tried hard not to research things that hit too close to home personally, because I believe that an academic must remain objective and have an arms -length approach to what I research because often in my field we do not disclose personal biases in our research literature like the social sciences often do. However, I am sure we all have considerable biases in our work whether we realise them or not.

Despite this drive for me to keep my work at arms-length two things have happened recently that has changed a bit of my thinking. Firstly, was a dear colleague, Dr Judith Hall, (Prof Emeritus) from Medical Genetics who convinced me that I must do some research on the long term follow up of individuals with a rare condition called Arthrogryposis Multiplex Congenita (or AMC), since no has done it, and it was a key priority raised at international AMC meetings. I was born with AMC which affected my jaw, shoulders and hands and feet.  A trauma, or virus or another insult happened to me during my fetal development. It affected my cells in my cord that send signals to the muscles. If these nerves do not work, the muscles get weak. Some muscles stayed strong while others got weaker or non existent, thus the stiffer joints. Some people are more affected and others are less affected. Two thirds of these individuals have a normal to high intellect, while a third group do not. These individuals may undergo a lot of surgery to straighten joints out as children but then once into the adult health care systems, it’s unclear what happens. This is where I came in. Dr Hall figured I had the skills and resources to figure this out. I wasn’t convinced but I begrudgingly thought I’d give it a try. Thanks to great students, an excellent research centre to work in (ICORD), and local funding we launched an online questionnaire to ask folks around the world, what’s happened using open questions and standardized questionnaires.

This study was went viral – well as viral as a study on a rare condition. It wasn’t too long before we had 177 people from around the world filling out this questionnaire and more than half of those wanting to do the more in-depth interview with my medical student. I was totally surprised. It’s the largest study ever done on this population of adults. The second largest study was on 90 people from the UK only. So you can see this new study was significant as it represented over 10 countries.

SO I thought, OK, we did it. Done! Well, not so fast! It has taken me by surprise how much interest is in this topic. Personally I didn’t think much about seeking other people with AMC or being worried what happened during ageing. My nerve injuries from my car accident and other issues was unique to me. I am special, that’s all. However, there are many AMCers keen to meet people and learn about the future. Parents of young children are hungry for any info that might give them hope while their children have many surgeries. My story and the stories and experiences of adults with AMC does matter to many. It matters to the surgeons who try desperately to help kids be as functional as possible. So far, I have presented this work twice to the annual AMC Support mtg in the US and in Montreal at a new AMC research group in Canada on AMC. My medical student has presented it a two academic meetings and submitted a journal article. I am heading to Poland to present it there this year. Never thought it would be so valuable, although Dr Hall did stress how important it was. I’ve received two local research grants and on involved in two federally funded grants. The next step is to look specifically at pain and disability in AMC.

So why is this happening? The second thing that is happening in the clinical research world is the need for what we call the Strategy for Patient-Outcomes Research, or SPOR for short. Canada’s federal granting agency, CIHR, plus others around the world have finally realised that we need to include patients in the process of research. CIHR states, “Patients need to be involved in all aspects of the research to ensure questions and results are relevant”.

This seems like a no brainer and we have been doing more and more of this at ICORD where I work with those who have a spina cord injury/disease. This means then I should become engaged in the research of my own condition, AMC. I am informing research and actually implementing it. It is a very strange place to be but maybe a healthy place to be. Maybe it’s timing but also maybe I am able to address the questions quicker since I am closer to the problems that those with AMC experience.

I spoke recently at the AMC Support meeting which was held in Oklahoma. I gave an update on the work that we have done showing the results from all participants who have completed the online survey. It was mostly adults with AMC in the audience. When I got up to speak, I got cheered! I never have had that response at any academic meeting. One usually get the polite clap. It made me realise that my skills in functional outcomes research is highly valuable to a group of people that has been widely ignored for so long. What is the future of individuals with AMC? For most part remarkably good or even amazing. People with AMC are smart, get lots of degrees (more than the average person), creative and adaptive to their disability, hard working despite living with considerable pain and disability. They get married, have jobs, volunteer, etc. Guess I am not so special after all, but that’s ok. Glad to be part of a special group of people.

Balancing between remaining objective in research and inputing some of my own persective is a challenge. I want to ensure the data is clean and represents the population, but it does need to be relevant to the people it serves. Firstly, it should serve the people who provided the information, then it should serve the clinicians who treat and care for the people and then it should serve the policy makers ,who hopefully with the information, make more global decisions that will help the people. If my experience helps to inform the study design, to encourage people to participate and also to get the results out there at all three levels, then that is good.

Glad to have great colleagues and students to work with at UBC and others around the world. They keep me on my toes and have done an amazing job to collect the best data so far. Doing this kind of work as a team is how I can “research myself”. I don’t do it alone and I certainly don’t do with out the input of the many great AMCers I have met so far. Thank you.