BackgroundMost countries face an ageing population, increasing chronic diseased, and constrictions on budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places.MethodsData on the type and level of access citizens have to their own health data in three countries was gathered from public sources.ResultsData from each individual country is presented and the experiences of Denmark, Estonia and Australia are examined whilst similarities and differences explored. The discussion adopts a citizen-centred perspective to consider how the different e-portal systems support, protect and structure citizen interactions with their own health data in three key areas: Security, privacy and data protection; User support; and Citizen adoption and use.ConclusionsThe paper highlights the impact of opt-in/opt-out approaches on citizen access and the lack of a structured approach to addressing differences in citizen health and e-health literacy. This research also confirms while current data provides detail on the availability and use of personal health data by citizens, questions still remain over the ultimate impact on patient outcomes of these initiatives. It is anticipated the insights generated from the three countries experiences, supporting citizen access to their health data will be useful to improve these initiatives and guide other countries aspiring to support similar initiatives.

Abnormal serum zinc and copper concentrations in pregnant women have been associated with a number of maternal and foetal complications during pregnancy and delivery. However, the results of previous studies are contradictory and few large scale studies have been reported. In this study we measured serum zinc and copper concentrations in maternal and umbilical cord blood from 500 Danish mothers at delivery, looking for an association between serum zinc and copper levels and various maternal and foetal complications. Preterm infants (n = 30) had significantly lower serum copper concentrations than reference infants (n = 346) (p = 0.01), whereas there was no difference in serum zinc concentrations. Mothers of preterm infants (n = 34) did not differ in serum zinc or copper concentrations from reference mothers (n = 220). Small for date infants (n = 37) and mothers of small for date infants (n = 47) had higher serum copper levels than reference infants and mothers (p = 0.02 and p = 0.04, respectively), whereas there was no difference in serum zinc concentrations. Serum zinc and copper concentrations in malformed infants (n = 14) and their mothers (n = 17) did not differ from concentrations in reference infants and mothers. Serum zinc and copper concentrations in mothers with various other complications during pregnancy and delivery did not differ from values in mothers with normal pregnancies and deliveries.

It is a philosophic question whether it is possible to establish common reference intervals valid for different ethnic groups and geographical areas. From a practical viewpoint, however, reference intervals are in current use and seem to be the best tool for a general validation of the first results from persons consulting the health care systemwhen clinical strategies with clear interpretation of results are missing. The reference individuals should be selected and the measurements and calculations should be performed according to IFCC (1, 3) or equivalent (cf. section 7.1). An important point, however, is the decisions about dwiding and combining different reference intervals as investigated by Harris and Boyd (2). According to them the problem is mainly a statistical problem, but as discussed in chapters 7.1, 7.2 and 7.3, it is also a question of judgements based on biology.

The plasma protein al-Antitrypsin (al-Proteinase Inhibitor) has many phenotypes, which have a major influence on the concentrations as measured in serum. The most common phenotype in Denmark is the MM-type, less common are the two heterozygote types MS and MZ, and with low frequency the heterozygote SZ and the homozygotes SS and ZZ. As heterozygotes have lower plasma concentrations, we decided to perform the phenotyping of the reference individuals in order to estimate separate reference intervals for type MM and the two heterozygote types MS and MZ.It has recently been proposed, that if relevant reference intervals for the different phenotypes existed, and certain quality goals could be met (11, quantification of al-Antitrypsin could be used to rule out the disease-causing ZZ and SZ phenotypesand also to identify all possible patients heterozygous for the Z-allele. It may also be reasonable to discontinue the acceptance of MZ as a normal variant, as recent publications points to this phenotype as predisposing to lung disease under certain conditions (3). Hence, only the MM's should determine the 'normal' reference interval. Analytical MethodsIdentification of genetically determined variants for al-Antitrypsin was done by phenotyping the al-Antitrypsin protein in serum by isoelectric focusing. The procedure described by Gorg et aZ. (2) on Immobilize@ DryPlates premade by LKB, Sweden (No 80-1128-29, pH 4.2-4.9) was used. In brief, gels were reswelled in 25 % w/v glycerol (applc. note 345, Pharmacia), serum was reduced with dithiothreitol, blocked with iodoacetamide, and 15 yL applied to the gel (4). The electrophoresis was run at 500 V, 2mA for 18 hours, the last 30 minutes at 2500 V, 2mA7 at 12 OC on the 23-955059

Background The Constant-care app solution (CC) has been shown to empower patients with mild-moderate Ulcerative Colitis (UC) in 5-ASA treatment and improve disease specific quality of life (1). Here we present preliminary data on our study to investigate the effects of CC on quality of life in patients with moderate-severe UC or Crohns Disease (CD) treated with s.c.vedolizumab, launched in June 2020 in Denmark. Methods The study is an ongoing non-interventional, observational study. Patients are homemonitored via CC for 24 months. CC shows data on patient’s disease status, grouping them into three: green (remission), yellow (worsening), red (severe disease). Patients were recruited from the outpatient clinic at the Department of Gastroenterology, North Zealand University Hospital, Greater Copenhagen. Simple Clinical Colitis Index (SCCAI), Harvey-Bradshaw Index (HB-I), Fecal calprotectin (FC) and short QoL (0–70) are measured every two months or during a flare up between fixed screenings. Serious adverse events (SAE) and adverse events (AE) are monitored. Results 19 patients out of 40 have been included, 8 with CD and 11 with UC. None experienced SAEs. Five experienced AEs, of which four discontinued treatment. One patient experienced treatment failure during this study. Of the 15 patients, two are in complete remission, (Q2 respectively Q3). Five of the remaining patients have not entered more than two data entries in CC (data not shown).All patients sustained remission based on FC, except for two data points for two individual patients. Good QoL ≥ 50 was almost unchanged for 6 patients. Conclusion IBD CC has proven a usefull tool for surveillance and maintenance of remission in IBD patients treated with s.c. vedolizumab. S.c. vedolizumab has in this patientgroup, shown to provide sustainable QoL, sustained remission, and to have few AEs. 1) Elkjaer M, Shuhaibar M, Burisch J, Bailey Y, Scherfig H, Laugesen B, et al. E-health empowers patients with ulcerative colitis: a randomised controlled trial of the web-guided ‘Constant-care’ approach. Gut. 2010;59(12):1652–61.