As a coodrinator-nurse in the rare disease unit, I respond to patients’ contacts and examine their situation on the treatment path and in the different treatment responsibility units. I organize expert meetings between treatment units if necessary. I work in the steering group of the university hospital, which consists of experts from different fields. I work in close cooperation with the chief physician of rare diseases.
I also work in national co-operation groups as a nursing representative. Working groups include: University hospitals’ Rare disease Units working group, Terveyskylä general and Terveyskylä Pro group, Finland Rare diseases working group, Customer jury working group, the Institute of Health and Welfare’s Rare disease expert working group, which produces presentations on its activities for the Finnish Parliament’s Rare disease department and ERN European rare disease working group and cooperation groups with patient organizations and the third sector.
As a rare disease nurse, I use Terveykylä’s general websites and digital treatment paths in my work.
https://www.terveyskyla.fi/genetiikkajaharvinaiset: e PlatformThe patient information system in the northern Savo welfare area is Uranus-Omni360 patient produced by CGI.
https://www.cgi.com/fi/fi/tuoteratkaisut/omni360-kertomus: e PlatformThe platforms of the Institute of Health and Welfare
https://thl.fi/fi/web/vammaispalvelujen-kasikirja/tuki-ja-palvelut/harvinaissairaudet: e PlatformERN = European Reference Networks
https://health.ec.europa.eu/european-reference-networks_en: e PlatformThe Orphanet platform is very informative regarding the use of diagnosis codes and registry data for rare diseases.
https://www.orpha.net/consor/cgi-bin/index.php: e PlatformNew social media platforms, which can be valuable in my future work:
- Doodle: invitations and subscribing to expert meetings
- Chat-GPT: producing content for trainings and general information search related to work tasks
- LinkedIn: Communication between professionals, telling the content of the rare disease field to an audience that does not know the specialty and can be helpful and promotes awareness
- WhatsApp: General communication between several different collaboration groups that does not contain identifiable information about users
- Blogger: With the help of blogger and blog posts, you can open content of interest to the target audience, conduct interviews, publish news and update research information for readers.
Doodle is useful for organizing meetings, because it allows you to send a message and a meeting invitation, time options for different times to several people at the same time. It does not fill e-mail or other contact channels, and the sender of the invitation easily gets information about the times accepted by the people. The negative feature is that you cannot put personal information into Doodle, because the platform works on websites, not in a secure connection to the patient system. Patient information is sent afterwards as a protected and encrypted message using a different channel.
By using or asking Chat GPT, you can find easily and quickly a short information package on different subject areas. In addition, it allows you to edit the text if your own text production ability is limited for some reason. Since the information is collected from several platforms on the internet, the reliability of the information cannot be guaranteed, but special attention must be paid to source criticism and research information must be searched separately as before.
LinkedIn is useful for professional and fact-based communication, sharing awareness and information. LinkedIn often profiles the person or organization it represents with its own profile. Using a company profile on LinkedIn is, I understand, more complicated. In hospital work, getting a company profile in use is tedious and requires going through the organization’s information security process.
WhatsApp helps communication between different groups that requires quick response. It reaches the necessary people in real time while operating on a mobile device. There can be several groups for different purposes. Even though it states that it encrypts all messages, it is important to remember all the elements of information security and data protection, and you should not enter any information there that cannot be made public.
Blogger is a previously unknown platform for me. Blog texts can be used to reach certain target groups that the content applies to or that members of the target group find useful. Blogging is often free-form and relaxed, but if you produce blog posts as a professional, it is also important to pay special attention to sources and source criticism. Especially if the people belonging to the target group are in a vulnerable position, special attention should be paid to the quality of the content and the reliability of the information.