Suomennos: Tutustutaan: Tutkimushoitajat
By Alison London, Sini Marttinen and Marjo Rajalaakso
Research nurses are the cornerstone of our team and a vital part of the research we do in the Aaltonen group at the University of Helsinki. Here, we meet our two excellent research nurses, Sini and Marjo, who support the lab both in our research and our well-being!
Hi! Can you introduce yourselves? And tell me a little about your background?
Sini: My name is Sini, I’m a research nurse in the Aaltonen lab. I got my job straight from the nursing school and I’ve been working here since December 2000.
Marjo: I’m Marjo and I’m a research nurse in Aaltonen’s group. I am a midwife by training and I graduated already in 1990, so I have accumulated a working career. As a nurse, I have worked in all stages of a person’s life cycle. While working at the population association’s heredity clinic, I got my first contact with the University world, and after I had my children, I came to work at Biomedicum and started in the Aaltonen group in 2011.
What is the role of a research nurse in the research process?
We have a variety of tasks. Marjo is busy with our myoma collection: running to Pathology to collect the myoma samples, collecting data from the patients and helping our scientists as much as possible with the samples and data. (Myomas are smooth, non-cancerous tumors that may develop in or around the uterus)
I mainly focus on genealogy and sample collections in addition to assisting with applications etc. We both have other tasks too, mine have to do with work-life well-being, safety and security. I also organize our parties and events.
How does genealogy get incorporated into the research?
When we get a sample from a patient, we want to know if there are more cases in the family. So we find out the first degree relatives (parents, siblings and children). If we find more tumors/cancers (in collaboration with the Finnish Cancer Registry), we expand the pedigree. The goal is to find index patients that are related to each other so that we have multiple samples from the same family. In the colon and rectal cancer project (CRC) the known mutations are checked by the hospital. Our work is to try and find new mutations. We do extensive genealogy work only for CRC-patients and for some other special projects.
Do either of you have contact with the patients who’s tumor material we use for our research? What is your general feeling about how people respond to being asked to participate in cancer research when they are currently under going treatment for cancer?
Couple of times a year someone might call and ask about the research or about their samples. Usually they just want to talk about their life of illness overall. In general Finnish people are very good in taking part in the research. They understand that even though it might not help them, it can help others. The samples are taken during the operations so there is no extra effort for the patients.
Then there are the rare occasions where we want to get blood samples from a specific family. After a clinician (doctor or nurse) gets the initial approval I can call one member of the family and explain what we are doing and what we need. We then ask them to recruit more family members. I call to explain to those who have agreed and they can then decide if they want to participate in giving us a sample. 99% of the people will say yes.
If we find a mutation that explains the tumors/cancers in their family, we will give them a chance to get that information for themselves, if they so choose. But that requires some genetic counseling (to explain what the results mean) and a new sample. I would say that most people want to know if they are carrying a gene mutation. Also, they might get preventive treatment or at least check-ups more often if they are carriers. The only thing we can promise these families is knowledge.
How would you communicate to a patient who doesn’t understand a consent form?
Our wonderful research nurses in hospitals try to explain our documents to the patients. The patients can also call me if needed. Sometimes they just don’t understand and it’s absolutely fine, we don’t need every single possible sample. We don’t want to pressure anybody. But I think about 90% of people are happy to just sign them because they want to help contribute to the research.
How do you maintain patient confidentiality?
We code all the samples when they arrive. Only a few people will know the true identity of the patients. Everybody needs to sign confidentiality agreement, our database with patient ids is heavily protected and we update our permits and knowledge of new laws when ever needed.
Whats an important quality in being a research nurse?
Having nurses in research groups are valuable because we know about confidentiality and have had some training on how to communicate and treat patients. We also have some knowledge of medicine and therefore understand what happens in the hospitals, about treatments and can read patient records. With some experience, anybody could do this if they find it interesting.
I think it’s important that you are somewhat interested in genealogy, can tolerate mess and unfinished business, aren’t squeamish out about guts and blood and can tolerate different kinds of people etc. Most of what I know now I have learned through doing the work. It might not be the job for you, if you dream to be around patients much or take part in caring for the patients, in that regards it’s not the most exciting job. Another thing to consider is that these projects last for decades and might not ever end, you have to be alright with being “never finished”.
If one is a little bit of a detective and quite curious, it helps. I love to dive into the pedigrees, find out about the history of the older generations and causes of death. Also, we have an excellent research group so even if some days the work is mundane, we love the people around us and get enjoyment from that.
Are there any particular challenges?
I would suggest that you would need to be accommodating to quick changing ideas and sometimes you may be required to work at a fast pace to meet deadlines, but other than that I can’t really think of any major challenges. Clearly, I love my job.
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