The Use of Embedded Open Source Software in Commercial Products

The purpose of this paper is to increase understanding about the use of embedded open source software in commercial telecommunication products. This paper applies concepts of value-creating systems to sourcing and use of open source software. In value creating systems, open source software communities do not operate in similar way as companies. Differences derive from organizational culture, values and motivation to create value, e.g. to develop the software. Companies are monetarily motivated to create value for their customers but open source software communities are mainly voluntarily creating value to themselves and their peers. These differences have to be understood and taken into account when companies are using open source software in commercial products. In this paper, a model proposal describing collaboration with the open source community when using open source software in commercial products is outlined. Key findings about applying the model in a case company are presented

Information Provision and Quality : A Pilot Study on Shared Decision-Making in Multiple Sclerosis

The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.publishedVersionPeer reviewe

Healthcare Professionals' Perceptions and Opinions on Do not Attempt Resuscitation (DNAR) Order and Documentation

Insights on end-of-life care decisions, such as do not attempt resuscitation (DNAR), vary between institutions and individual health care professionals. At the era of electronic patient records (EPR), the information of DNAR order may still be recorded in multiple locations making it difficult to find and interpret. A link to a structured web-based questionnaire was sent to all physicians and nurses working in Tampere University Hospital special responsibility area covering a catchment area of 900 000 Finns. Perceptions on DNAR order and documentation was surveyed. In total 934 subjects responded, of which 727 (77%) were nurses and 219 (23%) physicians covering all specialties. We found substantial variation in DNAR order interpretation and documentation among all health care professionals possibly causing information breakdown and compromised end-of-life care.publishedVersionPeer reviewe

Lack of Human Resources Leads to Breaches in Information Management Processes

Effective information management promotes safe patient care. Lack of human resources can cause failures when managing patient information. The aim of this study was to analyse the nature of reported patient safety incidents and their location in Choo's information management process model phases when the contributing factor of the incidents was related to human resources and the consequence of the incident was related to harm to the organization's corporate image. Data consisted of the information management related patient safety incident reports (n = 475) from 49 health and social care organizations from 2007-2016 in Finland. Deductive analysis and descriptive statistics were used to analyse the data. The results of the study indicated that the shortage of human resources contributed to incomplete documentation, insufficient information sharing between professionals and documenting of information in the wrong place. The majority of the incidents occurred during the information organizing and storage and information distribution phases of the information management process model. Despite the use of electronic health records and electronic patient data, a lack of human resources can lead to breaches in information management processes and harm an organization's corporate image in health and social care contexts.publishedVersionPeer reviewe

Neurologisten sairauksien vaikutus seksuaalisuuteen

Hermostolla on tärkeä merkitys seksuaalisuudessa ja seksuaalitoimintojen säätelyssä, joten moniin neurologisiin sairauksiin liittyy niiden ongelmia. Seksuaalitoimintojen vaikeutuminen voi johtua suoraan rakenteellisista muutoksista esimerkiksi selkäytimen vaurioituessa tai epäsuorasti neurologisten vaurioiden aiheuttaman toimintahäiriön kuten halvausoireiden tai koordinaatio-ongelmien vuoksi. Lisäksi toimintakykyyn vaikuttavat usein neurologisiin tauteihin tai niiden jälkitiloihin liittyvät mielialahäiriöt, kognitiiviset ongelmat ja persoonallisuuden muutokset. Merkittävimpiä seksuaalihäiriöitä aiheuttavia tekijöitä nuorilla aikuisilla ovat MS-tauti, selkäydinvammat ja osa epilepsian hoitoon käytettävistä lääkkeistä. Ikääntyneillä muun muassa aivoverenkiertohäiriöt ja neurodegeneratiiviset sairaudet, erityisesti Parkinsonin tauti, voivat heikentää seksuaalitoimintoja. Potilaan kokonaisvaltaisessa hoidossa on tärkeää muistaa seksuaalitoimintojen häiriön mahdollisuus. Hoitovaihtoehdot noudattavat samoja periaatteita kuin muissakin sairauksissa käytettävät vaihtoehdot.publishedVersionPeer reviewe

Medication adherence/persistence among patients with active multiple sclerosis in Finland

Objectives To explore adherence, persistence, and treatment patterns in patients with multiple sclerosis (MS) in Finland treated with disease-modifying therapies (DMTs) for active MS in 2005-2018. Materials and Methods The study cohort was identified using the Drug Prescription Register of Social Insurance Institute, Finland. All patients had at least one prescription of glatiramer acetate (GA), beta-interferons, teriflunomide, or delayed-release dimethyl fumarate (DMF). Adherence was calculated using proportion of days covered (PDC) (cutoff >= 0.8). Time to non-persistence was calculated by the number of days on index DMT treatment before the first treatment gap (>= 90 days) or switch and analyzed with time-to-event methodology. Results The cohort included 7474 MS patients (72.2% female; mean age 38.9 years). Treatment switches were steady over 2005-2012, peaked in 2015. PDC means (standard deviations) were GA, 0.87 (0.17); beta-interferons, 0.88 (0.15); DMF, 0.89 (0.14); teriflunomide, 0.93 (0.10). Adherence frequencies were GA, 78.4%; beta-interferons, 81.3%; DMF, 86.9%; teriflunomide, 91.7%. Logistic regression showed that age group, DMT and the starting year, sex, and hospital district independently affected adherence. Patients receiving teriflunomide and DMF, males, and older patients were more likely to persist on treatment. There was no difference in persistence between patients prescribed teriflunomide and DMF, or between GA and beta-interferons. Conclusions Oral DMTs had greater adherence and persistence than injectable DMTs.Peer reviewe

PROSHADE – Tietoon pohjautuva jaettu päätöksenteko terveydenhuollossa

PROSHADE on Suomen Akatemian Strategisen tutkimuksen neuvoston (STN) vuosille 2021–2026 rahoittama hanke ja osa STN:n LITERACY-ohjelmaa. Hankkeessa tutkitaan ja etsitään monitieteellisesti ratkaisuja tiedon kriittiselle käytölle yhteiskunnassa. PROSHADE tutkii talous- ja vaikuttavuustiedon käyttöä, jaetun päätöksenteon käytäntöjä terveydenhuollossa sekä potilaan tuottaman tiedon hyödyntämistä terveydenhuollon ammattilaisen ja potilaan välisessä päätöksenteossa. Hankkeessa on neljä työpakettia (WP). Tässä esittelyssä kuvataan sosiaali- ja terveydenhuollon tiedonhallinnan, neurologian ja sosiaalipsykologian tieteenaloja yhdistävän työpaketin 3 (WP3) tutkimusta tiedon lukutaidosta, kansalaisen ja potilaiden osallisuudesta terveydenhuollossa. Potilaan osallisuus ilmenee käytännössä potilaan ja terveydenhuollon ammattilaisen välisessä hoitoa koskevassa jaetussa päätöksenteossa. Potilaan osallisuuden vahvistamisella tavoitellaan muun muassa hoidon onnistumista, vahvempaa hoitoon sitoutumista ja hoitotyytyväisyyttä. Potilaan terveystiedon lukutaidolla (taito tunnistaa, etsiä, arvioida ja tuottaa terveyteen liittyvää tietoa) on merkitystä jaetussa päätöksenteossa. Potilaan tuottama tieto esimerkiksi mahdollistaa potilaan arvojen ja näkemysten huomioimisen paremmin osana hoitoa koskevaa jaettua päätöksentekoa. Tutkimustietoa tarvitaan selvittämään, kuinka jaettua päätöksentekoa ja potilaan ääntä saataisiin vahvistettua terveydenhuollon kohtaamisissa.The PROSHADE project is funded by the Strategic Research Council of the Academy of Finland for 2021–2026. The project is part of LITERACY program, where interdisciplinary solutions are researched and searched on critical information usage of individuals and organizations. In PROSHADE the focus of research is on decision-making and utilization of information in healthcare. PROSHADE consists of four work packages (WP). This presentation focuses on work package 3 (WP3), which researches health information literacy and the participation of patients in shared decision-making in healthcare. Increasing patient's participation according to earlier studies leads for example to better treatment success, patient satisfaction and stronger commitment to treatment. Patient’s health literacy (the ability to identify, search, evaluate, and generate health-related data) plays a central role in shared decision-making. Patient generated data enables patient’s values and preferences to be taken into account better as part of shared decision-making. However, research is required to further strengthen shared decision making in interactions in healthcare

Finnish multiple sclerosis patients treated with cladribine tablets : a nationwide registry study

Background: Cladribine tablets for adult patients with highly active relapsing multiple sclerosis (MS) have been available in Finland since 2018. Real-world data from different genetic and geographical backgrounds are needed to complement data from clinical trials.Methods: We investigated the use of cladribine tablets in Finland in a non-interventional cohort study, based on real-world data from the nationwide Finnish MS registry. All eligible patients who had initiated treatment with cladribine tablets in 2018-2020 were included. Descriptive analyses for outcomes were conducted using summary statistics. Time-dependent endpoints were analyzed using cumulated events analysis based on 1-Kaplan-Meier estimates and curves. Subgroups were analyzed separately according to the number of previous disease-modifying therapies (DMTs) and the most common last preceding therapies.Results: Data of 179 patients were analyzed. Median follow-up time was 19.0 months (interquartile range [IQR] 12.0-26.2). Of the 134 patients who were followed for at least 12 months, 112 patients (83.6%) remained relapse-free during follow-up. Mean annualized relapse rate (ARR) was 1.0 (standard deviation [SD] 0.89) at baseline, and 0.1 (SD 0.30) at follow-up. Patients with two or more previous DMTs had shorter time to first relapse (median 2.5 months, IQR 0.6-9.3) when compared to patients with 0-1 previous DMTs (median 11.4 months, IQR 8.7-13.1) (p=0.013). After excluding patients switching from fingolimod (n=33), a statistically significant difference in time to first relapse was no longer observed between the two groups (p=0.252). Adverse events (AEs) were reported in 30 patients (16.8%). The most frequent AE was headache (n=14, 7.8%). One patient (0.6%) died of cardiac arrest. Discontinuation of cladribine tablets was reported in nine patients (5.0%).Conclusion: The mean ARR observed in this cohort was similar to what has been reported in clinical trials. Approximately half of the patients had used two or more previous DMTs before cladribine tablets. These patients had a shorter time to first relapse when compared to patients with 0-1 previous DMTs, mostly driven by early relapses in patients switching from fingolimod.Peer reviewe

Multiple sclerosis in Finland 2018-Data from the national register

Objectives Finland is a high-risk multiple sclerosis (MS) region, but a national MS register has not existed until 2014. In this paper, we present the Finnish MS register variables and data collected by 31 December 2018. Materials and Methods Numbers and data counts of MS patients in the register (ICD-10 code G35) are presented. The disease types and proportion of patients receiving disease-modifying treatments (DMTs) were analysed in five hospital districts with most complete data sets. MS prevalence in Finland was estimated using administrative hospital discharge data as an additional resource. Results There were a total of 8722 MS patients in the Finnish MS register by 31 December 2018 (71.5% females). Mean age at MS diagnosis was 38.7 years and peak prevalence was at age 50-54 years. Disease course was relapsing remitting (RRMS) in 66.7%, secondary progressive (SPMS) in 13.5%, and primary progressive (PPMS) in 7.9% of the 5365 MS patients in the selected districts with most complete data. A total of 66.0% of RRMS patients, 19.6% of SPMS patients and 9.9% of PPMS patients were receiving DMTs. By combining MS register data with databases of those hospitals that had not joined the register, the nationwide prevalence estimate was between 10 and 11 thousand patients (corresponding to crude prevalence 180-200/100 000). Conclusions The Finnish MS register is currently used in 15/21 Finnish hospital districts. By register integration into the electronic patient files, the coverage of the register has increased to approximately 80% of the estimated Finnish MS population.Peer reviewe