• Ornela Bardhi

Two sides of my research: AI and Interviewing Patients. What I learned while running a qualitative s

Last week of November I finished an 11-months study. It was a qualitative study based mostly on semi-structured interviews. For everyone who doesn’t know me, well, I’m a trained computer engineer with a Masters degree on pervasive computing and sustainable development who is now working on an algorithm to predict the care journeys for future cancer patients. It is not common for engineers to get training in qualitative research, so here I'll present some tips to conduct one.

I learned a lot during this study and I’m not talking only about my topic, research or patients, but about myself. I will go there soon, but first I think I should share a few things you need to have in mind before starting a qualitative study in a hospital.

  1. Ethics application. First things first, prepare your documents for the ethics application. Ethics applications are even more important when you are involving patients. Every country or institution has their own application forms, but usually they all ask for the same information. Make sure you start preparing your application well in time, because you will need to consult with people working in the hospital to make sure you follow the hospital’s protocols. Think about every aspect, especially privacy and security, as if it was you participating in the study.

  2. Importance of gatekeeper. When running a study in a hospital, one should be a healthcare provider to contact a patient. I didn’t know that at the beginning. It wasn’t my fault; I had never worked in a hospital before; so how was I supposed to know? However, I completely understand the logic behind it. This is where the gatekeeper plays a great role. A gatekeeper is a person who works at the hospital and is in contact with patients. He or she will introduce your study to patients you want to recruit. Find this person before you start the study.

  3. Introduce your study. You might think all is set and you can start your study after you get the ethics approval. You are wrong!!! When you are conducting a study in a hospital, you must bring everyone on board, not only the gatekeeper. One way to do that is to bring consultants (a consultant is a hospital doctor of senior rank within a specific field), doctors, nurses, and everyone involved in patients care to a meeting and present your study to them. My research is focused on cancer, so the relevant people were going to be in the Oncology department. The Oncology department at Beacon Hospital organizes research meetings every month, so in my case I presented my study there.

  4. Make life easy for others to help you. I always liked the idea of the KEEP IT SIMPLE STUPID method, otherwise known as the KISS method. This is the best time to apply it. Healthcare providers are very busy looking after patients; no one has time to read a page long document just to find information about the kind of patients you are looking to recruit. A one or two sentence paragraph describing your study and bullet points to state the patient inclusion criteria is the document you ought to write and hand to key people who are involved directly with patient care.

  5. Introduce yourself. Going back to presenting the study to the oncology group. I found it very useful to participate in the oncology research group meeting because I was new to the hospital and knew nobody besides my supervisor. I saw this meeting as a great opportunity to introduce myself and get to know as many people as possible.

  6. Get to know people. I mentioned before the importance of introducing yourself to the research group and getting to know as many people as possible. The reason for this is simple; these are the people who will be your window to patients. I started attending 3 separate multidisciplinary team meetings (MDTs) every week, the oncology MDT, breast MDT and urology MDT.

  7. Collaborate with different people. I was recruiting breast and prostate cancer patients. Breast cancer patients go through the breast clinic and prostate cancer patients go through the urology department before any of them officially move on to the Oncology department. The oncology department has its inpatient ward and the day unit. In the in-patient ward there are people who have recently gone through a surgery or are not feeling well, due to side effects, infections or disease progression. Day unit is where patients go for chemotherapy, injections, consultations, blood tests, chemotherapy port flush etc. Another location where you will find cancer patients is the radiotherapy department. As you can see it would be difficult for a gatekeeper to be in all of these places at the same time. I’m happy to say that I had a great help from consultants and nurses as well.

  8. Be where patients usually are. I would suggest to all principal investigators to be where the patients are. My recruitment was very low the first few months. If healthcare professionals don’t see you every day, they will most definitely forget about you and your study. I changed my tactics and I went where the patients were. I started to get more patients referred to me. By the end of August, and before taking my well-deserved holidays, I had already done 60 interviews and had lined up a few more interviews for September.

  9. I will not lie, the first month was difficult, I had never worked in a hospital before and I didn’t know the healthcare system in Ireland either. Also, this was the first time I was the principal investigator of such a big study. The first 2 months were more like getting to know the hospital and people, attending MDT meetings, and learning as much about cancer as possible. There are some really good online courses about cancer such as Introduction to the Biology of Cancer, Introduction to Breast Cancer, Understanding Prostate Cancer.

I would say I learned a lot about myself too. I never thought I was so good with people. There were patients who told me to switch jobs or find something that would involve being in contact with people more than being in front of a computer. I completely agree. I enjoyed every bit of time I spent with patients. I’m a curious person, and in this case I wasn’t curious only about patients’ personal journey, but rather about how they overcame their fears and became strong for their families and themselves.

Another trait I realized I have is that I’m resourceful. After a few months in the hospital, I began to find my way around it and get to know more and more people every day who would help me with my study directly or indirectly. It is good to challenge yourself every now and then; you get to discover skills you never thought you had before.

#cancer #cancerpatients #breastcancer #prostatecancer #research #qualitativestudy #engineer #catchitn #H2020 #MSCA #secondment

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