Five years of pharmaceutical industry funding of patient organisations in Sweden: Cross-sectional study of companies, patient organisations and drugs.

BACKGROUND: Many patient organisations collaborate with drug companies, resulting in concerns about commercial agendas influencing patient advocacy. We contribute to an international body of knowledge on patient organisation-industry relations by considering payments reported in the industry's centralised 'collaboration database' in Sweden. We also investigate possible commercial motives behind the funding by assessing its association with drug commercialisation. METHODS: Our primary data source were 1,337 payment reports from 2014-2018. After extraction and coding, we analysed the data descriptively, calculating the number, value and distribution of payments for various units of analysis, e.g. individual companies, diseases and payment goals. The association between drug commercialisation and patient organisation funding was assessed by, first, the concordance between leading companies marketing drugs in specific diseases and their funding of corresponding patient organisations and, second, the correlation between new drugs in broader condition areas and payments to corresponding patient organisations. RESULTS: 46 companies reported paying €6,449.224 (median €2,411; IQR €1,024-4,569) to 77 patient organisations, but ten companies provided 67% of the funding. Small payments dominated, many of which covered costs of events organised by patient organisations. An association existed between drug commercialisation and industry funding. Companies supported patient organisations in diseases linked to their drug portfolios, with the top 3 condition areas in terms of funding-cancer; endocrine, nutritional and metabolic disorders; and infectious and parasitic disorders-accounting for 63% of new drugs and 56% of the funding. CONCLUSION: This study reveals close and widespread ties between patient organisations and drug companies. A relatively few number of companies dominated the funding landscape by supporting patient organisations in disease areas linked to their drug portfolios. This commercially motivated funding may contribute to inequalities in resource and influence between patient organisations. The association between drug commercialisation and industry funding is also worrying because of the therapeutic uncertainty of many new drugs. Our analysis benefited from the existence of a centralised database of payments-which should be adopted by other countries too-but databases should be downloadable in an analysable format to permit efficient and independent analysis.

Two decades of nation-wide community-based stroke support - The Singapore National Stroke Association.

The Singapore National Stroke Association, registered in 1996, offers support and information to stroke survivors and caregivers, and aims to raise public stroke awareness. In the last 20 years, we have developed programs to equip stroke survivors and caregivers with knowledge, life skills, comfort, and opportunities for socialization and reintegration. We have on-going public education and advocacy initiatives. Obtaining funding, member recruitment, volunteer retention, and leadership renewal are on-going challenges. Singapore National Stroke Association will continue to strive for the betterment of stroke survivors, their caregivers, and the public.

Coalition Priorité Cancer and the pharmaceutical industry in Quebec: conflicts of interest in the reimbursement of expensive cancer drugs?

In the context of scarce public resources, patient interest groups have increasingly turned to private organizations for financing, including the pharmaceutical industry. This practice puts advocacy groups in a situation of potential conflicts between the interests of patients and those of the drug companies. The interests of patients and industry can converge on issues related to the approval and reimbursement of medications. But even on this issue, interests do not always align perfectly. Using the Quebec example of Coalition Priorité Cancer (CPC) as a case study, we examine the ethical issues raised by such financial relationships in the context of drug reimbursement decision-making. We collected, compiled and analyzed publicly available information on the CPC's organization and activities; this approach allowed us to raise and discuss important questions regarding the possible influence exerted on patient groups by donors. We conclude with some recommendations.

[Briefing and accusation of medical malpractice--the second victim]. / Aufklärung und Behandlungsfehlervorwurf--Das zweite Opfer.

In June 2012, the German Medical Association (Bundesärztekammer) published the statistics of medical malpractice for 2011 [1]. Still ENT-specific accusations of medical malpractice are by far the fewest in the field of hospitals and actually even in the outpatient context. Clearly most of the unforeseen incidents still occur in the disciplines of trauma surgery and orthopedics. In total, however, an increasing number of errors in treatment can be noticed on the multidisciplinary level: in 25.5% of the registered cases, an error in treatment was found to be the origin of damage to health justifying a claim for compensation of the patient. In the year before, it was only 24.7%. The reasons may be manifold, but the medical system itself certainly plays a major role in this context: the recent developments related to health policy lead to a continuous economisation of medical care. Rationing and limited remuneration more and more result in the fact that therapeutic decisions are not exclusively made for the benefit of the patient but that they are oriented at economic or bureaucratic aspects. Thus, in the long term, practising medicine undergoes a change. According to the §§ 1, 3 of the professional code of conduct for doctors (Musterberufsordnung für Ärzte; MBO-Ä) medical practice as liberal profession is principally incompatible with the pursuit of profit, however, even doctors have to earn money which more and more makes him play the role of a businessman. Lack of personnel and staff savings lead to excessive workloads of physicians, caregivers, and nurses, which also favour errors. The quality and even the confidential relationship between doctor and patient, which is important for the treatment success, are necessarily affected by the cost pressure. The victims in this context are not only the patients but also the physicians find themselves in the continuous conflict between ethical requirements of their profession and the actual requirements of the realities in the healthcare field. But also the technical and scientific progress bear new risks beside the therapeutic successes, further especially bigger hospitals require high efforts regarding organisation favouring errors in cases of deficiencies. Even the increasing juridification of the medicine that is expected to achieve a provisional highlight with the planned law of patients' rights leads to an important focus on the quality of medical care [2]. The explicit legal regulation of patients' rights, which have never been out of question up to now, confirms the impression of patients who have to be protected from their doctors. This development favours a natural mistrust in the quality of the treatment and the desire of legal verification in cases of treatment failures. A totally perfect and error-free treatment, however, will never occur. Already this fact leads to the obligation to do everything possible to reduce the risk to an absolute minimum. The risks that might arise from a relation of treatment are manifold. Not only may the patient undergo risks that arise in particular from lacking or insufficient briefing, complications, or medical malpractice. Also the doctor has to fear legal consequences if he does not stick clearly to the increasing requirements that jurisdiction and legislation impose - not least by the planned law of patients' rights. In the following, the basic principles and particularities will be described that apply for the patients' briefing. Further the different types of medical malpractice will be explained in relation to the resulting procedural consequences. Finally some current problematic fields will be described with regard to other possible liabilities or responsibilities of physicians in hospitals or doctor's offices.

The evolution of advocacy and orthopaedic surgery.

BACKGROUND: The future direction of American health care has become increasingly controversial during the last decade. As healthcare costs, quality, and delivery have come under intense scrutiny, physicians play evolving roles as "advocates" for both their profession and patients via healthcare policy. Hospital-physician alignment is critical to the future success of advocacy among orthopaedic surgeons, as both hospitals and physicians are key stakeholders in health care and can work together to influence major health policy decisions. QUESTIONS/PURPOSES: We (1) define the role of advocacy in medicine, specifically within orthopaedic surgery; (2) explore the history of physician advocacy and its evolution; (3) examine the various avenues of involvement for orthopaedic surgeons interested in advocacy; and (4) reflect on the impact of such activities on the future of orthopaedic surgery as it relates to hospital-physician alignment. METHODS: We performed a comprehensive review of the literature through a bibliographic search of MEDLINE(®) and Google Scholar databases from January 2000 to December 2010 to identify articles related to advocacy and orthopaedic surgery. RESULTS: Advocacy among orthopaedic surgeons is critical in guiding the future of the American healthcare system. In today's world, advocacy necessitates a wider effort to improve healthcare access, quality, and delivery for patients on a larger scale. The nature of physician advocacy among orthopaedic surgeons is grounded in the desire to serve patients and alleviate their suffering. Participation in medical societies and political campaigns are two avenues of involvement. CONCLUSIONS: The increasing role of government in American health care will require a renewed commitment to advocacy efforts from orthopaedic surgeons. The role of advocacy is rapidly redefining the continuum of care to a trinity of clinical excellence, innovative research, and effective advocacy. Failure to recognize this growing role of advocacy limits the impact we can have for our patients.

Advocacy, communication and social mobilisation for tuberculosis control in Pakistan: a qualitative case study.

SETTING: A national-level study in four districts, one each in all four provinces of Pakistan, a high tuberculosis (TB) burden country. OBJECTIVES: To examine how advocacy, communication and social mobilisation (ACSM) campaigns by the National Tuberculosis Programme (NTP) in Pakistan engaged the populations of interest, to what extent they were successful in promoting services and desired behaviours, and how these campaigns could be improved. DESIGN: This was a qualitative case study comprising 13 focus groups and 36 individual interviews in four districts. All three levels of the ACSM programme, i.e., planners, implementers and beneficiaries, were included among the respondents. RESULTS: Improved political commitment, availability of funds, partnership with the private sector, visibility of the NTP and access to directly observed treatment (DOT) were achieved. Individual and social environmental issues of poor patients and marginalised communities were addressed to some extent, and could be improved in the future. Empathy and respect from physicians, and better service delivery of the DOTS-based programme were desired by the patients. CONCLUSIONS: The strategic advocacy ensured political and financial commitment; however, identification and targeting of vulnerable populations, and carrying out context-based social mobilisation and effective counselling are crucial to increase the use of DOT. Evaluations should be built-in from the beginning to increase the evidence on effectiveness of ACSM campaigns.

How advocates use health economic data and projections: the Irish experience.

Approximately 30,000 people die in Ireland each year. Currently over 6000 people access specialist palliative care services annually, a figure that is projected to rise to 12,500 by 2016. In 2006, the Irish Hospice Foundation entered a joint advocacy alliance with the Irish Cancer Society and the Irish Association for Palliative Care. By speaking with one voice and using quality data, these three national voluntary groups were able to influence government and social partners to address clearly identified regional inequities in the provision of palliative care services. Over the past three years, there has been significant public investment in palliative care services, culminating in the recent publication by the national health agency of a five-year plan for a comprehensive national palliative care service. However, the sudden economic downturn in 2008 and the severe deterioration of public finances threaten the implementation of the plan. New services can only be developed if there is strong evidence to illustrate that they are cost-effective in delivering patient care. Having reviewed the international evidence, the joint advocacy group has used this economic evidence to strengthen the case that the development of palliative care services can actually save money in health budgets. The campaign mounted by the joint advocacy group was greatly facilitated by the existence of good data and an agreed evidence-based policy on what constitutes a comprehensive service.