How to manage a virtual library?

Introduction. The Andalusian Public Health System Virtual Library (Biblioteca Virtual del Sistema Sanitario Público de Andalucía, BV-SSPA) was created in June 2006, after being determined by the II Quality Plan in the key process Guarantee the Knowledge Exchange into the Health System which was established by the Strategy IV, Knowledge Management, 2005-2008. It is a government strategy with its own budget and management with the aim of rationalizing the subscriptions into the Andalusian Health System and democratizing the health professional access to qualify scientific information, regardless of the professional workplace. Andalusia is a wide region with more than 8 million inhabitants, more than 90,000 health professionals for 41 hospitals, 1,500 primary healthcare centres, and 12 centres for non-medical attention purposes, and the Virtual Library was created to cover all this Health Services. Before the creation of the BV-SSPA every centre had its own budget and management decisions concerning scientific resources, with the creation of the BV-SSPA both management and budget were centralized. Objectives. With this work we pretend to analyze if the results after these five years have reached the expectations from an economic point of view and determine if really we can offer a benefit to the Andalusian Professional and Society in general. We will demonstrate the following: - The BV-SSPA supposed a cost reduction. It meant cost-effectiveness. - It resulted in Economics of Scale, as we have every year more resources and services investing a minor proportional amount of money. - In terms of Efficiency it implemented more services than the System had before its creation, we a lower budget. Methods. The BV-SSPA was appointed the only intermediary for contracting electronic resources destined to the Andalusian Health System. This had some consequences which should be analyzed: - Hospitals were not allowed to subscribe any resources. - Services offered for the whole System. - A remote access system was created. - Tools to give more visibility to the Public Health System were developed. - Negotiations techniques changed as the BV-SSPA is stronger than individual hospitals. Results. - The amount of 2,431 electronic reviews, 8 data bases and other scientific information resources at the disposal of the Andalusian Health System Professionals and available worldwide requiring only an internet connection. Before the BV-SSPA, 5,267 titles were subscribed by hospital and 2,967 of them were subscribed repeatedly (by two or more hospitals), this represented more than 55%. The rationalization of the subscription investment has been reached. - The establishment of several important scientific services for the whole territory of Andalusia, not only big hospitals. - The use of appropriate tools through a Web 2.0 and Social Media to be acknowledged by most National Health Professionals. Conclusions. It has been demonstrated that the BV-SSPA has become the Central Unit for purchasing, offering librarian services and a reference for users in terms of knowledge management, but from the point of view of business it has also obtained the following results: - Cost-Effectiveness: Its budget for subscriptions is lower than the hospital former one in a 30% and now more electronic resources are available. - Economics of Scale: Near 95,000 health professionals can access this Virtual Library in 2010. Before its creation Professionals for small hospital and Primary Care centres were not able to access to scientific information subscribed by big hospitals. - Efficiency Besides the central electronic purchasing, services were created for the System, without increasing the expenses: - Remote access to all the library resources independent of the user’s location. The BV-SSPA usage increased in a 147% in 2008, when it was installed. - The Document Supply Service implemented in 2009. - The Institutional Repository which contains the whole intellectual, scientific production generated by the Andalusian Public Health Professionals as a result of their healthcare, research or managing activity. - The creation of an application developed by the BV-SSPA to study the Andalusian Health System Scientific Production. - The visibility of the Andalusian Health System reached thanks to the BV-SSPA, through the numerous events in which it participates and organizes such as the 2nd. European National Digital Libraries of Health Conferences and the National Conference of Health Science Information and Documentation held in Cadiz in 2010; and its profile in social media where it can be contacted by citizens and health professionals all over the world. - Negotiation with electronic resource suppliers is much more advantageous as the BV-SSPA is stronger to deal with them thanks to its consolidated budget, its managing independence and its visibility.

Integrating Metalib and SFX into the BV-SSPA

Introduction To guarantee the success of a virtual library it is essential that all users can access all the library resources independently of the user’s location. Achieving this goal in the Andalusian Public Health System has been a particularly difficult task, due to it is made up of 10 research centers and 95.000 health-care professionals. Aims Since the BV-SSPA started three years ago, one of its mayor aims has been to provide remote access to all its resources in this complex scenario, as well as facilitate the access to the virtual library to both professionals and citizens. IP access was guaranteed because health-care professionals could access everything from their workplaces thanks to the intranet, but it was restricted when they were not there. The BV-SSPA solved this problem by installing a federated authentication and authorization system called PAPI and a PAPI rewriting proxy. After three years the BV-SSPA has met a new challenge: adapting its federated access system to Metalib and SFX, specifically the access management module PDS had to be connected with the existing PAPI system. This new challenge came along with the introduction of a new metasearcher and link resolver. Material and Methods Initially there were three independent systems: • A Metalib and SFX PDS module, • A federated authentication and authorization system: PAPI. • A PAPI Rewriting Proxy. The chosen solution went through the reutilization of the existing software. To achieve this goal, a PHP connector between these applications was developed and several modules in the PDS configuration were modified. On the other hand, providing a simplified access to Metalib has been solved using Xerxes and integrating it in a Drupal website. Results Thanks to this connector the BV-SSPA was able to get all its users remotely accessing its new metasearcher without changing the way they used to validate, or without having to remember a new username and password. Futhermore, thanks to Xerxes, it is possible to use Metalib from a simple interface and without having to leave the BV-SSPA website to go its native interface.

Optimization of treatment with interferon beta in multiple sclerosis. Usefulness of automatic system application criteria

Background. A software based tool has been developed (Optem) to allow automatize the recommendations of the Canadian Multiple Sclerosis Working Group for optimizing MS treatment in order to avoid subjective interpretation. METHODS: Treatment Optimization Recommendations (TORs) were applied to our database of patients treated with IFN beta1a IM. Patient data were assessed during year 1 for disease activity, and patients were assigned to 2 groups according to TOR: "change treatment" (CH) and "no change treatment" (NCH). These assessments were then compared to observed clinical outcomes for disease activity over the following years. RESULTS: We have data on 55 patients. The "change treatment" status was assigned to 22 patients, and "no change treatment" to 33 patients. The estimated sensitivity and specificity according to last visit status were 73.9% and 84.4%. During the following years, the Relapse Rate was always higher in the "change treatment" group than in the "no change treatment" group (5 y; CH: 0.7, NCH: 0.07; p < 0.001, 12 m - last visit; CH: 0.536, NCH: 0.34). We obtained the same results with the EDSS (4 y; CH: 3.53, NCH: 2.55, annual progression rate in 12 m - last visit; CH: 0.29, NCH: 0.13). CONCLUSION: Applying TOR at the first year of therapy allowed accurate prediction of continued disease activity in relapses and disability progression.

TRAIL/TRAIL Receptor System and Susceptibility to Multiple Sclerosis

The TNF-related apoptosis inducing ligand (TRAIL)/TRAIL receptor system participates in crucial steps in immune cell activation or differentiation. It is able to inhibit proliferation and activation of T cells and to induce apoptosis of neurons and oligodendrocytes, and seems to be implicated in autoimmune diseases. Thus, TRAIL and TRAIL receptor genes are potential candidates for involvement in susceptibility to multiple sclerosis (MS). To test whether single-nucleotide polymorphisms (SNPs) in the human genes encoding TRAIL, TRAILR-1, TRAILR-2, TRAILR-3 and TRAILR-4 are associated with MS susceptibility, we performed a candidate gene case-control study in the Spanish population. 59 SNPs in the TRAIL and TRAIL receptor genes were analysed in 628 MS patients and 660 controls, and validated in an additional cohort of 295 MS patients and 233 controls. Despite none of the SNPs withstood the highly conservative Bonferroni correction, three SNPs showing uncorrected p values<0.05 were successfully replicated: rs4894559 in TRAIL gene, p = 9.8×10(-4), OR = 1.34; rs4872077, in TRAILR-1 gene, p = 0.005, OR = 1.72; and rs1001793 in TRAILR-2 gene, p = 0.012, OR = 0.84. The combination of the alleles G/T/A in these SNPs appears to be associated with a reduced risk of developing MS (p = 2.12×10(-5), OR = 0.59). These results suggest that genes of the TRAIL/TRAIL receptor system exerts a genetic influence on MS.

Adherence to interferon β-1b treatment in patients with multiple sclerosis in Spain

BACKGROUND Adherence to interferon β-1b (INFβ-1b) therapy is essential to maximize the beneficial effects of treatment in multiple sclerosis (MS). For that reason, the main objectives of this study are to assess adherence to INFβ-1b in patients suffering from MS in Spain, and to identify the factors responsible for adherence in routine clinical practice. METHODOLOGY/PRINCIPAL FINDINGS This was an observational, retrospective, cross-sectional study including 120 Spanish patients with MS under INFβ-1b treatment. Therapeutic adherence was assessed with Morisky-Green test and with the percentage of doses received. The proportion of adherent patients assessed by Morisky-Green test was 68.3%, being indicative of poor adherence. Nevertheless, the percentage of doses received, which was based on the number of injected medication, was 94.3%. The main reason for missing INFβ-1b injections was forgetting some of the administrations (64%). Therefore, interventions that diminish forgetfulness might have a positive effect in the proportion of adherent patients and in the percentage of doses received. In addition, age and comorbidities had a significant effect in the number of doses injected per month, and should be considered in the management of adherence in MS patients. CONCLUSION/SIGNIFICANCE Among all the available methods for assessing adherence, the overall consumption of the intended dose has to be considered when addressing adherence.

Telehealth system (e-CUIDATE) to improve quality of life in breast cancer survivors: rationale and study protocol for a randomized clinical trial.

BACKGROUND Breast cancer survivors suffer physical impairment after oncology treatment. This impairment reduces quality of life (QoL) and increase the prevalence of handicaps associated to unhealthy lifestyle (for example, decreased aerobic capacity and strength, weight gain, and fatigue). Recent work has shown that exercise adapted to individual characteristics of patients is related to improved overall and disease-free survival. Nowadays, technological support using telerehabilitation systems is a promising strategy with great advantage of a quick and efficient contact with the health professional. It is not known the role of telerehabilitation through therapeutic exercise as a support tool to implement an active lifestyle which has been shown as an effective resource to improve fitness and reduce musculoskeletal disorders of these women. METHODS / DESIGN This study will use a two-arm, assessor blinded, parallel randomized controlled trial design. People will be eligible if: their diagnosis is of stages I, II, or IIIA breast cancer; they are without chronic disease or orthopedic issues that would interfere with ability to participate in a physical activity program; they had access to the Internet and basic knowledge of computer use or living with a relative who has this knowledge; they had completed adjuvant therapy except for hormone therapy and not have a history of cancer recurrence; and they have an interest in improving lifestyle. Participants will be randomized into e-CUIDATE or usual care groups. E-CUIDATE give participants access to a range of contents: planning exercise arranged in series with breathing exercises, mobility, strength, and stretching. All of these exercises will be assigned to women in the telerehabilitation group according to perceived needs. The control group will be asked to maintain their usual routine. Study endpoints will be assessed after 8 weeks (immediate effects) and after 6 months. The primary outcome will be QoL measured by The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 version 3.0 and breast module called The European Organization for Research and Treatment of Cancer Breast Cancer-Specific Quality of Life questionnaire. The secondary outcomes: pain (algometry, Visual Analogue Scale, Brief Pain Inventory short form); body composition; physical measurement (abdominal test, handgrip strength, back muscle strength, and multiple sit-to-stand test); cardiorespiratory fitness (International Fitness Scale, 6-minute walk test, International Physical Activity Questionnaire-Short Form); fatigue (Piper Fatigue Scale and Borg Fatigue Scale); anxiety and depression (Hospital Anxiety and Depression Scale); cognitive function (Trail Making Test and Auditory Consonant Trigram); accelerometry; lymphedema; and anthropometric perimeters. DISCUSSION This study investigates the feasibility and effectiveness of a telerehabilitation system during adjuvant treatment of patients with breast cancer. If this treatment option is effective, telehealth systems could offer a choice of supportive care to cancer patients during the survivorship phase. TRIAL REGISTRATION ClinicalTrials.gov Identifier: NCT01801527.

Effectiveness of glatiramer acetate compared to other multiple sclerosis therapies.

OBJECTIVE To assess the effectiveness of glatiramer acetate (GA) compared to other multiple sclerosis (MS) therapies in routine clinical practice. MATERIALS AND METHODS Observational cohort study carried out in MS patients treated with GA (GA cohort) or other MS therapies -switched from GA- (non-GA cohort). Study data were obtained through review of our MS patient database. The primary endpoint was the Expanded Disability Status Scale (EDSS) scores reached at the end of treatment/last check-up. RESULTS A total of 180 patients were included: GA cohort n = 120, non-GA cohort n = 60. Patients in the GA cohort showed better EDSS scores at the end of treatment/last check-up (mean ± SD, 2.8 ± 1.8 vs. 3.9 ± 2.2; P = 0.001) and were 1.65 times more likely to show better EDSS scores compared to the non-GA cohort (odds ratio, 0.606; 95%CI, 0.436-0.843; P = 0.003). Patients in the GA cohort showed longer mean time to reach EDSS scores of 6 (209.1 [95%CI, 187.6-230.6] vs. 164.3 [95% CI, 137.0-191.6] months; P = 0.004) and slower disability progression (hazard ratio, 0.415 [95%CI, 0.286-0.603]; P < 0.001). The annualized relapse rate was lower in the GA cohort (mean ± SD, 0.5 ± 0.5 vs. 0.8 ± 0.5; P = 0.001) and patients' quality of life was improved in this study cohort compared to the non-GA cohort (mean ± SD, 0.7 ± 0.1 vs. 0.6 ± 0.2; P = 0.01). CONCLUSIONS GA may slow down the progression of EDSS scores to a greater extent than other MS therapies, as well as achieving a greater reduction in relapses and a greater improvement in patients' quality of life. Switching from GA to other MS therapies has not proved to entail a better response to treatment.