scholarly journals The PID Life Index: An Interactive Tool To Measure The Status of The PID Healthcare Environment in Any Given Country

2021 ◽  
Author(s):  
Leire Solis ◽  
Julia Nordin ◽  
Johan Prévot ◽  
Nizar Mahlaoui ◽  
Silvia Sánchez-Ramón ◽  
...  
Keyword(s):  
Specific Weight ◽  
Primary Immunodeficiencies ◽  
Patient Organisation ◽  
Health Coverage ◽  
Life Index ◽  
Patient Organisations ◽  
Medical Institutions ◽  
The Status ◽  
National Patient ◽  
Interactive Map

Abstract Background: The “Primary Immunodeficiencies (PIDs) principles of care” were published in 2014 as the gold standard for care of patients with PIDs. Since then, IPOPI, the International Patient Organisation for Primary Immunodeficiencies, has been working with national PID patient organisations as well as collaborating with scientific and medical institutions and experts to bring these principles closer to the day-to-day life of individuals with PIDs. Results: The PID Life Index was developed in 2020 to assess the status of the PID environment and the implementation of the 6 principles worldwide. The Index allows for benchmarking countries according to a set of principles and criteria or based on the user’s preferences. This can be displayed in an interactive map or through a data visualisation system. The 6 PID Principles of Care were reviewed to consider advances in the field of health and science, as well as to include political developments that had occurred since their initial publication in 2014. This resulted in the following 6 principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. All principles are given the same weight while the criteria have a specific weight. PID Life Index also includes documentation on each country, on PID specialised centres taking care of patients with PIDs (children or adults), on immunoglobulin replacement therapies registered in each country as well as a glossary of the terminology used. Conclusion: The PID Life Index aims at becoming a resource for patients with PIDs and their representatives, healthcare professionals, decision-makers and other relevant stakeholders interested in learning more about the concrete situation of patients with PIDs. With this tool IPOPI wants to increase awareness and information as well as support advocacy initiatives on PIDs nationally, regionally or globally.

scholarly journals The PID Life Index: an interactive tool to measure the status of the PID healthcare environment in any given country

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Leire Solís ◽  
Julia Nordin ◽  
Johan Prevot ◽  
Nizar Mahlaoui ◽  
Silvia Sánchez-Ramón ◽  
...  
Keyword(s):  
Primary Immunodeficiencies ◽  
Patient Organisation ◽  
Health Coverage ◽  
Life Index ◽  
Patient Organisations ◽  
Medical Institutions ◽  
The Status ◽  
National Patient ◽  
Interactive Map

Abstract Background The “Primary Immunodeficiencies (PIDs) principles of care” were published in 2014 as the gold standard for care of patients with PIDs, setting a common goal for stakeholders to ensure that patients with PID have access to appropriate care and good quality of life. Since then, IPOPI (the International Patient Organisation for Primary Immunodeficiencies), has been working with national PID patient organisations as well as collaborating with scientific and medical institutions and experts to bring these principles closer to the day-to-day life of individuals with PIDs. Method The six PID Principles of Care were revised to consider advances in the field, as well as political developments that had occurred after their initial publication in 2014. Based on this revision the list was updated, and a new principle was added. The six established principles were: diagnosis, treatment, universal health coverage, specialised centres, national patient organisations and registries. Each principle was structured and measured through a series of criteria, and was given the same weight, as they have been considered to all be equally important. Specific weights were attributed to the criteria depending on their relevance and importance to quantify the principle. The index was translated into a survey for data collection: initially involving data from selected countries for a pilot, followed by integration of data from IPOPI’s national member organisations and key countries. Results The PID Life Index was developed in 2020 to assess the status of the PID environment and the implementation of the 6 principles worldwide. The Index allows for benchmarking countries either according to a set of principles and criteria or based on the user’s preferences. This can be displayed in an interactive map or through a data visualisation system. Conclusion The PID Life Index has been developed successfully and has potential to become an important source of information for PID stakeholders, to increase awareness and information as well as support advocacy initiatives on PIDs nationally, regionally or globally.

scholarly journals The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index

2021 ◽  
Vol 12 ◽  
Author(s):  
Julia Nordin ◽  
Leire Solís ◽  
Johan Prévot ◽  
Nizar Mahlaoui ◽  
Helen Chapel ◽  
...  
Keyword(s):  
Treatment Options ◽  
Scientific Progress ◽  
Diagnostic Tools ◽  
Status Report ◽  
Health Coverage ◽  
Hematopoietic Stem ◽  
Life Index ◽  
Patient Organisations ◽  
The World ◽  
Global Status

A global gold standard framework for primary immunodeficiency (PID) care, structured around six principles, was published in 2014. To measure the implementation status of these principles IPOPI developed the PID Life Index in 2020, an interactive tool aggregating national PID data. This development was combined with a revision of the principles to consider advances in the field of health and science as well as political developments since 2014. The revision resulted in the following six principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. A questionnaire corresponding to these principles was sent out to IPOPI’s national member organisations and to countries in which IPOPI had medical contacts, and data was gathered from 60 countries. The data demonstrates that, regardless of global scientific progress on PIDs with a growing number of diagnostic tools and better treatment options becoming available, the accessibility and affordability of these remains uneven throughout the world. It is not only visible between regions, but also between countries within the same region. One of the most urgent needs is medical education. In countries without immunologists, patients with PID suffer the risk of remaining undiagnosed or misdiagnosed, resulting in health implications or even death. Many countries also lack the infrastructure needed to carry out more advanced diagnostic tests and perform treatments such as hematopoietic stem cell transplantation or gene therapy. The incapacity to secure appropriate diagnosis and treatments affects the PID environment negatively in these countries. Availability and affordability also remain key issues, as diagnosis and treatments require coverage/reimbursement to ensure that patients with PID can access them in practice, not only in theory. This is still not the case in many countries of the world according to the PID Life Index. Although some countries do perform better than others, to date no country has fully implemented the PID principles of care, confirming the long way ahead to ensure an optimal environment for patients with PID in every country.

scholarly journals Delivering bad news in the perspective of patient rights

2020 ◽  
Vol 66 (3) ◽  
Author(s):  
Krzysztof Sobczak ◽  
Katarzyna Leoniuk ◽  
Agata Janaszczyk
Keyword(s):  
Online Survey ◽  
Patient Rights ◽  
Moderate Level ◽  
Bad News ◽  
Computer Assisted ◽  
Full Information ◽  
Patient Organisations ◽  
National Patient ◽  
Level Of Knowledge ◽  
Attending Physicians

Introduction: The necessity to deliver bad news to patients is one of the classic challenges of medical communication. The applicable patient rights oblige doctors to communicate full information concerning adverse condition tactfully and cautiously.The purpose of the study was to determine the level of knowledge of the rights and responsibilities of the patient in people who had received bad news, to identify the fields in which knowledge is lacking and to check if the level of knowledge affected the patient’s behaviour.Materials and methods: The study was conducted with 314 people who had been given bad news. An original Computer-Assisted Web Interview (CAWI) online survey questionnaire was used. Reaching the respondents was possible thanks to our cooperation with national patient organisations and electronic media.Results: One in 5 respondents (21%) was characterised by little knowledge concerning patient rights and responsibilities; 67% had a moderate level of knowledge or were almost fully aware of their rights. A vast majority of the respondents knew that they were entitled to full information about their condition, prognosis and treatment, as well as an inspection of their medical documentation.Conclusions: The knowledge of patient rights seems to be at an unsatisfactory level. Respondents with a higher education and those suffering from cancer had more knowledge. Patients with little or a moderate level of knowledge of patient rights and responsibilities were more likely to change their attending physicians or discontinue their treatments.

scholarly journals Institutional barriers and enablers to implementing and complying with internationally accepted quality standards in the local pharmaceutical industry of Pakistan: a qualitative study

2019 ◽  
Vol 34 (6) ◽  
pp. 440-449 ◽  
Author(s):  
Fatima Tauqeer ◽  
Kirsten Myhr ◽  
Unni Gopinathan
Keyword(s):  
Qualitative Study ◽  
Quality Standards ◽  
Health Coverage ◽  
Local Production ◽  
Institutional Barriers ◽  
Middle Income ◽  
Additional Information ◽  
Barriers And Enablers ◽  
The Status ◽  
Regulatory Capacity

Abstract Complying with good manufacturing practices (GMP) and ensuring a quality system is integral to production and supply of quality medicines and achieving universal health coverage. This study focus on the local production of medicines in Pakistan, a lower middle-income country that has observed considerable growth in the number of pharmaceutical companies over the past two decades. Against this background, we investigated: (1) How is quality assurance (QA) and GMP compliance understood and acted upon by local pharmaceutical manufacturers?; (2) What are the institutional barriers and enablers for QA and GMP compliance in the local pharmaceutical sector from the perspective of key stakeholders?; and (3) What are the institutional barriers and enablers for strengthening local regulatory capacity to improve QA in the industry in the long term? We used a qualitative study design involving 22 interviews of the drug regulatory bodies (n = 9), academia (n = 3) and local manufacturers (n = 10), identifying key themes in data by thematic analysis. Document analysis was used to collect additional information and supplement the interview data. We identified that manufacturing facilities operated under different GMP standards and interpretations, pointing towards an absence of harmonization in quality standards across the industry. Views diverged about the status of GMP compliance, with interviewees from academia presenting a more critical view compared with regulators who promoted a more positive story. Among the barriers explaining why companies struggled with quality standards, the lack of a mindset promoting quality and safety among profit-oriented manufacturers was prominent. At the federal level, DRAP’s establishment represented an institutional improvement aiming to promote QA through inspections and guidance. While some positive measures to promote quality have been observed, the need for DRAP to strengthen its technical and regulatory capacity, enhance its engagement in international collaboration and learning, and improve transparency and accountability were highlighted. Overall, since the challenges in Pakistan are shared with other low- and middle-income countries with local production, there is a need to commit to international collaborative mechanisms, such as those lead by WHO, on this issue.

scholarly journals Life-Saving Drugs in Sudan: A Matter of Defi nitions and Concepts

2021 ◽  
Vol 5 (1) ◽  
pp. 001-009
Author(s):  
Esraa Mahadi Ali Mohamed ◽  
Khalid Sayid Abdelgadir Habbani ◽  
Mohamed Awad Mousnad
Keyword(s):  
Service Providers ◽  
Low Cost ◽  
Healthcare Services ◽  
Essential Medicines ◽  
Health Coverage ◽  
Healthcare Needs ◽  
Life Saving ◽  
The Status ◽  
Pharmaceutical Organization ◽  
Important Input

Background: Drugs are one of the most crucial pillars in the provision of healthcare services and achieving Universal Health Coverage (UHC). Life-Saving Drugs (LSDs) are the drugs that save someone’s life, require immediate administration in most of the cases, as they sustain life, and prevent complications. They are top priority healthcare needs, which required to be available and aff ordable at all time in adequate quantities and low cost for the whole population and thus achieving equity. Since pharmaceutical sector in Sudan is highly fragmented, this study is conducted to determine the degree of stakeholders’ knowledge about the defi nition of LSD, whether there is a policy governing them, if they have a standard list and their availability status in Sudan. Methods: G rounded theory qualitative (exploratory) study design. The theory is grounded from the actual data after being collected and analysed. Results: Only essential medicines is the well-known term for the stakeholders -mainly at the governance level- with its policy and list. The other LSDs terminologies were found to be ambiguous, with no policies or standard lists. The status of the availability of the diff erent LSDs terminologies (as it perceived by each stakeholder) was found to be poor and there is a signifi cant shortage mainly due to the economic issues. Conclusions: Unifi cation of pharmaceutical organization in Sudan is a must and a priority issue due to its ultimate importance in the provision of healthcare services. Consensus and participation of all the relevant stakeholders in designing policies is an important input for a well-designed health system governance. Further researches in diff erent areas must be conducted, and awareness of policymakers and service providers must be raised.

scholarly journals Research and Survey on the Status of Hospital Graded Care System and its Related Industries

2021 ◽  
Vol 251 ◽  
pp. 01036
Author(s):  
Weijie Tang
Keyword(s):  
Primary Care ◽  
Health Care ◽  
General Practice ◽  
Health Care Reform ◽  
Treatment System ◽  
Medical Reform ◽  
Medical Institutions ◽  
The Status ◽  
Different Levels ◽  
Medical Process

The graded treatment system refers to the gradation of diseases according to their priority and ease of treatment, with medical institutions at different levels undertaking the treatment of different diseases and gradually realizing the medical process from general practice to specialization. Since the “new medical reform”, China has been committed to promoting “primary care”, “two-way referral”, “separation of acute and slow treatment” The “new health care reform” has been implemented in China since the beginning of the reform. However, in the process of implementation, the effectiveness of the system has always been controversial due to the inadequate construction of primary medical institutions and the weak awareness of graded treatment among residents.

scholarly journals Towards equitable surgical systems: development and outcomes of a national surgical, obstetric and anaesthesia plan in Tanzania

2019 ◽  
Vol 4 (2) ◽  
pp. e001282 ◽  
Author(s):  
Isabelle Citron ◽  
Desmond Jumbam ◽  
James Dahm ◽  
Swagoto Mukhopadhyay ◽  
Karolina Nyberger ◽  
...  
Keyword(s):  
Professional Associations ◽  
Health Coverage ◽  
Strategic Objectives ◽  
Patient Organisations ◽  
Disability Adjusted Life ◽  
Health Community ◽  
Life Years ◽  
Essential Surgery ◽  
Ancillary Staff ◽  
Anaesthesia Care

AbstractDespite emergency and essential surgery and anaesthesia care being recognised as a part of Universal Health Coverage, 5 billion people worldwide lack access to safe, timely and affordable surgery and anaesthesia care. In Tanzania, 19% of all deaths and 17 % of disability-adjusted life years are attributable to conditions amenable to surgery. It is recommended that countries develop and implement National Surgical, Obstetric and Anesthesia Plans (NSOAPs) to systematically improve quality and access to surgical, obstetric and anaesthesia (SOA) care across six domains of the health system including (1) service delivery, (2) infrastructure, including equipment and supplies, (3) workforce, (4) information management, (5) finance and (6) Governance. This paper describes the NSOAP development, recommendations and lessons learnt from undertaking NSOAP development in Tanzania.The NSOAP development driven by the Ministry of Health Community Development Gender Elderly and Children involved broad consultation with over 200 stakeholders from across government, professional associations, clinicians, ancillary staff, civil society and patient organisations. The NSOAP describes time-bound, costed strategic objectives, outputs, activities and targets to improve each domain of the SOA system. The final NSOAP is ambitious but attainable, reflects on-the-ground priorities, aligns with existing health policy and costs an additional 3% of current healthcare expenditure.Tanzania is the third country to complete such a plan and the first to report on the NSOAP development in such detail. The NSOAP development in Tanzania provides a roadmap for other countries wishing to undertake a similar NSOAP development to strengthen their SOA system.

scholarly journals Under-reported relationship: a comparative study of pharmaceutical industry and patient organisation payment disclosures in the UK (2012–2016)

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e037351 ◽  
Author(s):  
Piotr Ozieranski ◽  
Marcell Csanádi ◽  
Emily Rickard ◽  
Shai Mulinari
Keyword(s):  
Conflicts Of Interest ◽  
Descriptive Analysis ◽  
Patient Organisation ◽  
Entire Study Period ◽  
Industry Data ◽  
Industry Funding ◽  
Entire Study ◽  
Patient Organisations ◽  
Drug Companies ◽  
The Uk

ObjectivesTo examine the under-reporting of pharmaceutical company payments to patient organisations by donors and recipients.DesignComparative descriptive analysis of payments disclosed on drug company and charity regulator websites.SettingUK.Participants87 donors (drug companies) and 425 recipients (patient organisations) reporting payments in 2012–2016.Main outcome measuresNumber and value of payments reported by donors and recipients; differences in reported payments from/to the same donors and recipients; payments reported in either dataset but not the other one; agreement between donor–recipient ties established by payments; overlap between donor and recipient lists and, respectively, industry and patient organisation data.ResultsOf 87 donors, 63 (72.4%) reported payments but 84 (96.6%) were mentioned by recipients. Although donors listed 425 recipients, only 200 (47.1%) reported payments. The number and value of payments reported by donors were 259.8% and 163.7% greater than those reported by recipients, respectively. The number of donors with matching payment numbers and values in both datasets were 3.4% and 0.0%, respectively; for recipients these figures were 7.8% and 1.9%. There were 24 and 3 donors missing from industry and patient organisation data during the entire study period, representing 38.1% and 3.6% of those in the respective datasets. The share of donor–recipient ties in which industry and patient organisation data agreed about donors and recipients was 38.9% and 68.4% in each dataset, respectively. Of 63 donors reporting payments, only 3 (4.8%) had their recipient lists fully overlapping with patient organisation data. Of 200 recipients reporting industry funding, 102 (51.0%) had their donor lists fully overlapping with industry data.ConclusionsBoth donors and recipients under-reported payments. Existing donor and recipient disclosure systems cannot manage potential conflicts of interest associated with industry payments. Increased standardisation could limit the under-reporting by each side but only an integrated donor–recipient database could eliminate it.

scholarly journals Application of Random Forest Method Classification to Predict BPJS Kesehatan Card Users Who Receive Contribution Assistance in Karangasem District, Bali Province 2017

2020 ◽  
Vol 17 (2) ◽  
pp. 178-188
Author(s):  
Qonita Raihananda ◽  
I Wayan Edy Darma Putra ◽  
Monica Seftaviani Sijabat ◽  
Sifa Rofatunnisa ◽  
Ibnu Maruf ◽  
...  
Keyword(s):  
Random Forest ◽  
Provincial Government ◽  
Health Coverage ◽  
Community Based ◽  
Capita Expenditure ◽  
Random Forest Method ◽  
Testing Data ◽  
The Status ◽  
Per Capita ◽  
The Government

BPJS Kesehatan is a social security facility provided by the government to all people who are registered as members. BPJS Kesehatan membership is divided into two, namely BPJS for Contribution Assistance Recipients (BPJS PBI) and BPJS Non-Contribution Assistance Recipients (BPJS Non-PBI). In 2019, Bali Province is targeted to achieve Universal Health Coverage of 95 percent so that the Bali Provincial Government has budgeted funds worth IDR 945 billion to finance JKN - KBS services which are integrated with JKN - KIS. Karangasem is one of the four districts in Bali Province that received the most percentage of financing, which is 51 percent of the total budget needed when compared to other areas. This study aims to classify the BPJS-PBI recipient community based on education variables, employment indicators, age, and per capita expenditure in Karangasem Regency in 2017. The classification method used in this study is the random forest method. The results showed that the per capita expenditure variable had the largest contribution in classifying the status of PBI participants. The model that is formed produces an accuracy of 0.8017. This means that the model can predict 80.17 percent testing data correctly.

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