Oikean datan löytämisen tärkeys: Case terveydenhuollon operaatioiden kehitysprojektit

The utilization of data in healthcare improvement projects is currently a very topical subject. Several public and private companies have shown the value of utilizing data to improve operational efficiency. Not all datasets are, however, equally useful – thus, understanding of the data quality is required to ensure correct decision-making. Currently, two streams of literature exist to guide the improvement teams: the literature on operational improvement, e.g. through methods such as Total Quality Management, Lean, and Six Sigma, and the literature on data quality. From the point-of-view of an improvement project team, a linkage between these two streams of literature is missing. This paper aims to bridge the gap between the two streams of literature by helping healthcare improvement teams to assess whether the data quality is sufficient to support decision-making. The academic framework illustrates, how the viewpoint of data quality has transformed from an intrinsic focus on the 1970s, to fitness for use on the 1990s, finally to describing the specifics of the new trends, such as big data or unstructured data, in the 2010 onwards. Using the case study method, the findings were expanded by observing an improvement project in a private Finnish healthcare company. Together with the project team, I went through an iterative process with five steps: each of which was guided by a distinctive, new set of data. Finally, the actual improvement was gained by gathering the data manually: a dataset which was highly relevant for the end users, but likely to be intrinsically less robust as the previous datasets. As a conclusion, the current data quality literature can bring only modest guidance for the improvement teams in terms of choosing the right dataset. Rather, a new model for the data quality in healthcare operational improvement was created. The model suggests that the teams should first consider whether the dataset is relevant for the goal of the improvement project. After that, the improvement team should consider if the dataset can add value to reaching the goal of the project. After these two steps, the other key data quality attributes linking to the following four dimensions come to play: accessibility, intrinsic, representational, and contextual quality.Datan käyttäminen terveydenhuollon prosessikehityksessä on laajaa kiinnostusta herättävä aihe. Kaksi pää kirjallisuussuuntaa on kehittynyt datan laadun tutkimiseksi: kirjallisuus operaatiokehityksestä eli aiheista, kuten TQM, Lean ja Six Sigma, ja kirjallisuus datan laadusta. Nämä kaksi suuntausta ovat kuitenkin usein riittämättömiä kehitystiimien päätöksenteon tueksi. Tämän diplomityön tarkoitus on yhdistää nämä kaksi kirjallisuussuuntausta frameworkiksi, joka auttaa tiimejä arvioimaan datan soveltuvuutta omaan kehitysprojektiinsa. Työn kirjallisuuskatsaus kuvaa, miten käsitys datan laadusta on muuttunut 1970-luvulta nykypäivään. 1970-luvulla datalaadun kirjallisuuden fokus oli sisäisessä laadussa (intrinsic quality). 1990-luvulle siirtyessä painopiste siirtyi kuvailemaan datan laatua sen soveltuvuuden kautta (fitness for use), ja 2010-luvulle siirryttäessä kirjallisuuteen tuli mukaan uusia trendejä, kuten big data tai strukturoimaton data. Tuloksien tueksi seurattiin kehitysprojektia, joka toteutettiin suomalaisessa yksityisessä terveydenhuollon yrityksessä. Yhdessä projektitiimin kanssa, kirjoittajan matka projektin edetessä voidaan tiivistää viiteen vaiheeseen, joista jokaisessa uusi datasetti näytteli tärkeää roolia. Lopulta suurin edistysaskel projektissa saatiin keräämällä data manuaalisesti. Manuaalisesti kerätty data oli erittäin relevantti projektille, mutta sisäisiltä ominaisuuksiltaan huonompi. Tulosten pohjalta voidaan päätellä, että nykyinen kirjallisuus datan laadusta voi tuoda enintään keskinkertaista tukea kehitystiimien datan laadun arvioinnille. Tästä syystä uusi malli data laadun tutkimiselle terveydenhuollossa luotiin työn tuloksena. Malli ehdottaa, että projekti tiimien pitäisi ensimmäisenä arvioida datasetin relevanttiutta käyttötarkoitukselle. Toisena askeleena tiimin kannattaa miettiä onko data arvokasta vastaamaan projektin senhetkisiin haasteisiin. Näiden kahden askeleen jälkeen, tiimin kannattaa käyttää kirjallisuudessa laajasti tunnistettuja datalaadun tekijöitä oman datasetin laatunsa arviointiin

Gemtuzumab-Ozogamicin-Related Impaired Hemoglobin-Haptoglobin Scavenging as On-Target/Off-Tumor Toxicity of Anti-CD33 AML Therapy : A Report of Two Cases

Gemtuzumab-ozogamicin (GO) is a humanized anti-CD33 antibody, which is conjugated to a cytotoxic calicheamicin. It is used to treat acute myeloid leukemia (AML) in combination with chemotherapy. We describe here two GO-treated acute myeloid leukemia (AML) cases: both patients suffered from a toxic syndrome, which manifested as impaired hemoglobin-haptoglobin scavenging and accumulation of hemolysis-related products. Our observations and earlier reports indicated that the reaction was caused by GO-targeted destruction of CD33 + CD163+ monocytes/macrophages, which are responsible for the clearance of hemoglobin-haptoglobin complexes. The rise of plasma lactate dehydrogenase was an early sign of the reaction, and both patients had high levels of free plasma hemoglobin, but plasma haptoglobin and bilirubin levels were paradoxically normal. Symptoms included septic fever and abnormalities in cardiac tests and in the case of the first patient, severe neurological symptoms which required intensive care unit admittance. Therapeutic plasma exchanges supported the patients until the recovery of normal hematopoiesis. The symptoms may be easily confounded with infectious complications-related organ damage. Regarding the increasing use of gemtuzumab-ozogamicin and other emerging CD33-targeted cell therapies, we want to highlight this mostly unknown and probably underdiagnosed toxicity.Peer reviewe

Lasten kodin ulkopuolelle sijoittamisen syyt, taustat, palvelut ja kustannukset : HuosTa-hankkeen (2014- 2015) päätulokset

Mistä kaikesta on kysymys silloin, kun yhteiskunta sijoittaa lapsen oman kotinsa ulkopuolelle? Keitä nämä lapset ovat, millaisista perheistä ja olosuhteista he tulevat? Tämä ajankohtainen tutkimus tuo esiin kriittisiä näkökulmia siihen, mitä palveluja lapset ja perheet ovat saaneet ennen lapsen sijoitusta kodin ulkopuolelle ja siihen, onko näiden palvelujen avulla onnistuttu vaikuttamaan lapsen tilanteeseen sitä parantaen. Tutkimus kurkistaa myös sosiaalityön sisään: millaisessa toimintaympäristössä sosiaalityöntekijät joutuvat tekemään vaikeita ratkaisuja. Tutkimuksen tekemiseen on osallistunut suuri joukko toimijoita. Tulokset perustuvat sosiaalityöntekijöiden tietoon ja heidän keräämäänsä laajaan lapsikohtaiseen aineistoon. Kun ajattelee sosiaalityötä Eerikan jälkeen, niin sitä ollaan valokeilassa Olemme rohkeita, kun asetumme arvioimaan omia tekemisiämme. Sosiaalityön alalla on katsomista myös itseensä, ja että tämä onnistuu kaiken tämän jälkeen, mitä lastensuojelusta on mediassa ollut, ja on edelleen, ja asiat jatkuu. Aika poikkeuksellinen ammattikunta kaikkiaan arvioimaan itseään kehittämisen hengessä! - Sosiaalityöntekijä työpajass

Aikuisten immunologinen trombosytopenia ja sen uudet hoidot

English summaryPeer reviewe

STAT3 activation in large granular lymphocyte leukemia is associated with cytokine signaling and DNA hypermethylation

Large granular lymphocyte leukemia (LGLL) is characterized by somatic gain-of-function STAT3 mutations. However, the functional effects of STAT3 mutations on primary LGLL cells have not been studied in detail. In this study, we show that CD8+ T cells isolated from STAT3 mutated LGLL patients have high protein levels of epigenetic regulators, such as DNMT1, and are characterized by global hypermethylation. Correspondingly, treatment of healthy CD8+ T cells with IL-6, IL-15, and/or MCP-1 cytokines resulted in STAT3 activation, increased DNMT1, EZH2, c-MYC, l-MYC, MAX, and NF kappa B levels, increased DNA methylation, and increased oxidative stress. Similar results were discovered in KAI3 NK cells overexpressing gain-of-function STAT3(Y640F) and STAT3(G618R) mutants compared to KAI3 NK cells overexpressing STAT3(WT). Our results also confirm that STAT3 forms a direct complex with DNMT1, EZH2, and HDAC1. In STAT3 mutated LGLL cells, DNA methyltransferase (DNMT) inhibitor azacitidine abrogated the activation of STAT3 via restored SHP1 expression. In conclusion, STAT3 mutations cause DNA hypermethylation resulting in sensitivity to DNMT inhibitors, which could be considered as a novel treatment option for LGLL patients with resistance to standard treatments.Peer reviewe

Effects of Gender on Basic Numerical and Arithmetic Skills : Pilot Data From Third to Ninth Grade for a Large-Scale Online Dyscalculia Screener

In this study, we analyzed the development and effects of gender on basic number skills from third to ninth grade in Finland. Because the international comparison studies have shown slightly different developmental trends in mathematical attainment for different language groups in Finland, we added the language of education as a variable in our analysis. Participants were 4,265 students from third to ninth grade in Finland, representing students in two national languages (Finnish, n = 2,833, and Swedish, n = 1,432). Confirmatory factor analyses showed that the subtasks in the dyscalculia screener formed two separate factors, namely, number-processing skills and arithmetic fluency. We found a linear development trend across age cohorts in both the factors. Reliability and validity evidence of the measures supported the use of these tasks in the whole age group from 9 to15 years. In this sample, there was an increasing gender difference in favor of girls and Swedish-speaking students by grade levels in number-processing skills. At the same time, boys showed a better performance and a larger variance in tasks measuring arithmetic fluency. The results indicate that the gender ratio within the group with mathematical learning disabilities depends directly on tasks used to measure their basic number skills.Peer reviewe

Effects of Gender on Basic Numerical and Arithmetic Skills: Pilot Data From Third to Ninth Grade for a Large-Scale Online Dyscalculia Screener

In this study, we analyzed the development and effects of gender on basic number skills from third to ninth grade in Finland. Because the international comparison studies have shown slightly different developmental trends in mathematical attainment for different language groups in Finland, we added the language of education as a variable in our analysis. Participants were 4,265 students from third to ninth grade in Finland, representing students in two national languages (Finnish, n = 2,833, and Swedish, n = 1,432). Confirmatory factor analyses showed that the subtasks in the dyscalculia screener formed two separate factors, namely, number-processing skills and arithmetic fluency. We found a linear development trend across age cohorts in both the factors. Reliability and validity evidence of the measures supported the use of these tasks in the whole age group from 9 to15 years. In this sample, there was an increasing gender difference in favor of girls and Swedish-speaking students by grade levels in number-processing skills. At the same time, boys showed a better performance and a larger variance in tasks measuring arithmetic fluency. The results indicate that the gender ratio within the group with mathematical learning disabilities depends directly on tasks used to measure their basic number skills.</p

Anti-COX-2 autoantibody is a novel biomarker of immune aplastic anemia

In immune aplastic anemia (IAA), severe pancytopenia results from the immune-mediated destruction of hematopoietic stem cells. Several autoantibodies have been reported, but no clinically applicable autoantibody tests are available for IAA. We screened autoantibodies using a microarray containing >9000 proteins and validated the findings in a large international cohort of IAA patients (n = 405) and controls (n = 815). We identified a novel autoantibody that binds to the C-terminal end of cyclooxygenase 2 (COX-2, aCOX-2 Ab). In total, 37% of all adult IAA patients tested positive for aCOX-2 Ab, while only 1.7% of the controls were aCOX-2 Ab positive. Sporadic non-IAA aCOX-2 Ab positive cases were observed among patients with related bone marrow failure diseases, multiple sclerosis, and type I diabetes, whereas no aCOX-2 Ab seropositivity was detected in the healthy controls, in patients with non-autoinflammatory diseases or rheumatoid arthritis. In IAA, anti-COX-2 Ab positivity correlated with age and the HLA-DRB1*15:01 genotype. 83% of the >40 years old IAA patients with HLA-DRB1*15:01 were anti-COX-2 Ab positive, indicating an excellent sensitivity in this group. aCOX-2 Ab positive IAA patients also presented lower platelet counts. Our results suggest that aCOX-2 Ab defines a distinct subgroup of IAA and may serve as a valuable disease biomarker.Peer reviewe

Dominant TOM1 mutation associated with combined immunodeficiency and autoimmune disease

Mutations in several proteins functioning as endolysosomal components cause monogenic autoimmune diseases, of which pathogenesis is linked to increased endoplasmic reticulum stress, inefficient autophagy, and defective recycling of immune receptors. We report here a heterozygous TOM1 p.G307D missense mutation, detected by whole-exome sequencing, in two related patients presenting with early-onset autoimmunity, antibody deficiency, and features of combined immunodeficiency. The index patient suffered from recurrent respiratory tract infections and oligoarthritis since early teens, and later developed persistent lowcopy EBV-viremia, as well as an antibody deficiency. Her infant son developed hypogammaglobulinemia, autoimmune enteropathy, interstitial lung disease, profound growth failure, and treatment-resistant psoriasis vulgaris. Consistent with previous knowledge on TOM1 protein function, we detected impaired autophagy and enhanced susceptibility to apoptosis in patient-derived cells. In addition, we noted diminished STAT and ERK1/2 signaling in patient fibroblasts, as well as poor IFN-gamma and IL-17 secretion in T cells. The mutant TOM1 failed to interact with TOLLIP, a protein required for IL-1 recycling, PAMP signaling and autophagosome maturation, further strengthening the link between the candidate mutation and patient pathophysiology. In sum, we report here an identification of a novel gene, TOM1, associating with early-onset autoimmunity, antibody deficiency, and features of combined immunodeficiency. Other patient cases from unrelated families are needed to firmly establish a causal relationship between the genotype and the phenotype.Peer reviewe