The iCare-PD project is a global project that encourages patient education worldwide. As such, the recruitment of many different forms of medical staff is crucial for our success. The training process for our project members is an integral part of welcoming them, as the missing gaps that many newly diagnosed Parkinson’s Disease patients have can be detrimental to how they navigate their lives while adapting to their condition. Our project believes that integrated care should focus on the patient for their benefit. We also firmly believe that having medical staff that are adequately equipped for any situation is the key to continued success.
I was able to speak about this process with Nurse John Inocentes, another member of our project. Nurse Inocentes is based in Dublin, Ireland, and is associated with Dublin Neurological Institute at the Mater Hospital. In our interview, Nurse Inocentes was able to give me educated insight into how integrated care matters so much to members of the community he is based in, and how an individual’s care plan can only benefit from integrated care procedures, such as telemedicine.
Siobhan Rollo
— Student in Digital Journalism at the University of Ottawa Rollo
Question: How did you join the project?
Answer: Essentially I was recruited… as a clinical research nurse, and part of my contract was to be part of the iCare-PD project. The major funding opportunity for our institution was coming from the grant attached to the iCare-PD project.
Question: What skills and/or personality traits do you think are important for medical staff who treat patients with Parkinson’s Disease?
Answer: A big thing that’s a must-have for patients with Parkinson’s… is a lot of patience. Because, as you know, Parkinson’s Disease patients tend to be a bit slower, have some issues with communication, they’re typically a bit older. You need to take time with them to understand their problems, tease out the details of what they’re experiencing and how you can help them, so, there are not a lot of Parkinson’s patients- particularly those who are older- who have the language to communicate [their needs].
Question: What do you feel are key components of healthcare for patients with Parkinson’s Disease who want to live more independently?
Answer: Telemedicine and having access to care… through technology is important. Another thing is having access to a group of specialized healthcare professionals… having a team to help them live independently. [Independent patients] need the same resources: physiotherapists, speech therapists or occupational therapists, those are the people… [who] help you become more independent and teach you ways to overcome the disabilities that you would face and how to be able to adapt.
Question: Who do you feel are some of the key medical professionals or processes involved in the care process for Parkinson’s Disease?
Answer: Neurologists who have expertise in movement disorders. At our site, it would be Professor Lynch, Professor Richard Walsh, and Dr. Connor Ferran. Another essential team member is Parkinson’s nurse specialist. I’m half a Parkinson’s nurse specialist and half a research nurse, but there’s also a full-time Parkinson’s nurse [at our facility]. They’re a great resource because they’re a link to the community… if patients have problems out in their community related to their Parkinson’s, they would contact the nurse specialist and be able to be given proper medical advice as opposed to contacting the consultants who are very busy and hard to get a hold of.
Question: Does the iCare-PD mission statement resonate with you as a healthcare professional?
Answer: Yeah, I think we definitely need to always address our patient’s needs and take in the culture and the worldly context of technological advancements. We need to improve the care we deliver in that setting, so, utilizing the tools available, and integrating that into the care we deliver to our patients. I agree with that. In Ireland, there’s a big movement for integrated care.
Question: Do you notice this movement spreading throughout other countries in Europe?
Answer: I think so, but… it’s staggered. I spoke with a nurse out in Italy and our versions of integrated care are different. They are hard to apply in the opposing country.
Question: Would you add anything to the mission statement if you could? Or change any of the language in it?
Answer: Not really. I think it’s specific enough to understand what the mission statement is trying to get across, but it’s also broad enough for people to take the message and be able to apply it to whatever situation they’re in. I wouldn’t change it.
Question: In your experience, how does the cultural diversity of iCare-PD benefit the project?
Answer: That’s interesting because you get to learn about different countries and where they’re at in terms of how their healthcare system is structured, it’s really helpful because it informs me about how we can possibly adopt some aspects of [other] healthcare systems, or how they deliver healthcare. It’s also interesting to see- being in Europe- how there’s a drastic difference in how each country approaches healthcare. [Coming] from outside of Europe and after living here for a couple of years I would have thought there’d be more of a harmonized way of dealing with how to deliver healthcare, but it’s very individualized country per country. It’s interesting to see how certain methods of care work in certain environments, but I think a lot of that is cultural. Certain models work better in different cultures.
Question: What does integrated care mean to you?
Answer: Integrated care for me is shifting away from an acute hospital setting and towards a community-focused setting.
Question: What are some of the benefits of integrated care? Particularly for patients who are looking for a more independent treatment program.
Answer: What I found beneficial is that with the iCare-PD approach, patients were being seen much more often. It’s like an intensive Parkinson’s program. There are a lot of information gaps in a patient’s initial diagnosis such as what their Parkinson’s is, what that means in their lifetime, and how to manage their symptoms, so throughout the [program] you work with them continually. At the end of the program, they are much more aware [of their condition]. Afterwards, I found a lot of patients knew when to call us, which the average patient doesn’t do. What happens in that case is that they end up waiting for a year for their next appointment, and then having terrible quality of life because their symptoms are terrible… the lack of education as to what can be done was missing for the majority of [our] patients and iCare-PD allowed us to educate them.
Question: What is the iCare-PD training process like for nurses?
Answer: I came into the project late. There’s normally formal training with Dr.Tiago Mestre, and they go through a set of modules over the course of three months. I was given the modules to work through independently and Tiago would check in with me to ask if I had questions or needed clarification… I also had a movement disorder clinic here [at my facility] every Thursday in which I was able to sit in with clinicians and learn how they approach treating patients with Parkinson’s and what the medical management looked like. That’s how I was trained as an iCare-PD nurse, through lectures provided by Tiago and consortium. I would apply it when I could with our clinic. There’s a lot we’re trying to establish here with iCare-PD. It had already existed to a certain degree, but Tiago just put a label on it.
Meeting with Nurse John Inocentes was a privilege. He was able to give insight not only into the iCare-PD project and some of the behind-the-scenes processes, but it was also incredibly beneficial to have a European perspective on what integrated care should look like moving forward.
Nurse Inocentes mentioned that a lot of his patients were geriatric and that they need a very involved process of care that integrated care allows. Nurse Inocentes made note that sometimes geriatric patients will wait until they have a confirmed in-person appointment with a healthcare specialist, which is often detrimental to their condition. He made note that integrated care was an incredibly successful way to remedy this because of the quick access to telehealth care in order for them to get assessed for their problems. He also noted the importance of community and having a specialist to talk to about any problems that arise with one’s condition. Nurse Inocentes put an emphasis on communication with the community in order to better understand the care required of Parkinson’s patients.
Siobhan Rollo
— Student in Digital Journalism at the University of Ottawa