Financial relationships between patient and consumer representatives and the health industry: A systematic review.

BACKGROUND: Patients and consumers are increasingly engaged in health policymaking, research and drug regulation. Having financial relationships with the health industry creates situations of conflicts of interest (COI) and might compromise their meaningful and unbiased participation. OBJECTIVE: To synthesize available evidence on the financial relationships between the health industry and patient and consumer representatives and their organizations. METHODS: We systematically searched MEDLINE and EMBASE. We selected studies and abstracted data in duplicate and independently. We reported on outcomes related to financial relationships of individuals with, and/or funding of organizations by the health industry. RESULTS: We identified a total of 14 510 unique citations, of which 24 reports of 23 studies were eligible. Three studies (13%) addressed the financial relationship of patient and consumer representatives with the health industry. Of these, two examined the proportion of public speakers in drug regulatory processes who have financial relationships; the proportions in the two studies were 25% and 19% respectively. Twenty studies (87%) addressed funding of patient and consumer organizations. The median proportion of organizations that reported funding from the health industry was 62% (IQR: 34%-69%) in questionnaire surveys, and 75% (IQR: 58%-85%) in surveys of their websites. Among organizations for which there was evidence of industry funding, a median proportion of 29% (IQR: 27%-44%) acknowledged on their websites receiving that funding. CONCLUSION: Financial relationships between the health industry and patient and consumer representatives and their organizations are common and may not be disclosed. Stricter regulation on disclosure and management is needed.

Disease Campaigns and the Decline of Treatment Advocacy.

In the past fifty years, disease advocacy organizations have multiplied and gained political influence, but they have often been reluctant to ask the government to intervene in health care provision. This article asks why. Using original quantitative and qualitative data on the goals and political claims of over one thousand organizations from 1960 through 2014, I find that many early disease advocacy organizations prioritized health care access. But unfavorable political climates discouraged new organizations from focusing on access to treatment. When health care became particularly controversial, even organizations with health care-related missions refrained from pursuing this goal politically. Eventually, politically active organizations began to drop treatment provision from their missions. Over the decades, the troubled politics of health care reshaped the field of disease advocacy, diminishing its focus on medical treatment.

["For us, as 'patients/users', the essential point remains the respect of the person"]. / « Pour nous "usagers patients", le point essentiel reste le respect de la personne ¼.

The first organisation to bring together the users of care in the history of the speciality, the French National Federation of Patient Associations in Psychiatry has always campaigned for the respect of users' freedom of movement. Despite the progress made in terms of legislation, the federation presents a mixed picture. For Claude Filkenstein, its president, there remains a long way to go, notably in the field of the culture of psychiatric care. In her opinion, training should be a major advantage.

Hybrids do it better: Lessons from websites of hybrid organizations in modern health movements.

Hybrid organizations in modern health movements adopt multiple organizational logistics, allowing them to more effectively achieve social change. We conducted an analysis of 152 probreastfeeding organization websites categorized as institutionalized organizations, grassroots organizations, or hybrid organizations. Through a series of ANOVA analyses, we found that hybrid's websites provide significantly more useful health care information, better maintained dialogue with members, more efficiently mobilized members, commoditized health care issues less, and created member identity while maintaining institutional ties. Ultimately, hybrids tended to incorporate the positive elements from both grassroots and institutional organizations, while rejecting many of the negative elements.

Pharmaceutical industry, academia and patient advocacy organizations: what is the recipe for synergic (win-win-win) collaborations?

Biological complexity and the need for highly differentiated medicines means that drug discovery and development have become increasingly challenging and expensive. Thus, new paradigms for research and drug development need to be created that bring together a wide array of expertise. One potential solution is collaboration between bio-pharma and academic research centres. Two examples are discussed, one with a large pharma company (GlaxoSmithKline) and the other a small biotech (Genoa Pharmaceuticals). Patient advocacy organization can also have role in assisting in the creation of these partnerships by informing patients of ongoing research and clinical trials, and supporting the development of networks that can provide major benefit for both basic research and drug development. A major 'hurdle' for the creation of these relationships is the issue of intellectual property. Examples are provided of how this issue can be resolved.

The Big Society in an age of austerity: threats and opportunities for Health Consumer and Patients' Organizations in England.

BACKGROUND AND OBJECTIVE: Health consumer and patients' organizations (HCPOs) seek to influence policy. But how are they affected by developments in the policy context and political environment? DESIGN: The article draws on original research into HCPOs in the UK by the authors, including a major survey undertaken in 1999 and interviews with HCPOs and policymakers between 2000 and 2003 as well as a further survey in 2010. It also draws on a review of key government policies on health and the voluntary sector since 1997. RESULTS: Developments in the political environment and policy context have created both opportunities and threats for HCPOs as they seek to influence policy. These include policies to promote choice and competition in public services; support for a greater role for the voluntary sector and civil society in health and welfare (including the current government's 'Big Society' idea); NHS reorganization; changes to the system of patient and public involvement; and austerity measures. Devolution of powers within the UK with regard to health policy and the rising profile of the EU in health matters have also had implications for HCPOs. DISCUSSION AND CONCLUSION: This analysis raises key issues for future research in the UK and elsewhere, such as how will HCPOs be able to maintain independence in an increasingly competitive environment? And how will they fare in an era of retrenchment? There are also challenges for HCPOs in relation to maintaining relationships in a new institutional setting characterized by multilevel governance.

Analysis of patient organizations' needs and ICT use--The APTIC project in Spain to develop an online collaborative social network.

BACKGROUND: The purpose of this first part of the APTIC (Patient Organisations and ICT) project is to design and run an online collaborative social network for paediatric patient organizations (PPOs). OBJECTIVE: To analyse the needs of PPOs in Spain to identify opportunities to improve health services through the use of ICT. SETTING AND PARTICIPANTS: A convenience sample of staff from 35 PPOs (54.68% response rate) participated in a structured online survey and three focus groups (12 PPOs). RESULTS: Paediatric patient organizations' major needs are to provide accredited and managed information, increase personal support and assistance and promote joint commitment to health care. Moreover, PPOs believe in the Internet's potential to meet their needs and support their activities. Basic limitations to using the Internet are lack of knowledge and resources. CONCLUSION: The discussion of the data includes key elements of designing an online collaborative social network and reflections on health services provided.

Convenience foods, as portrayed by a consumer organisation. Test-Aankoop/Test-Achats (1960-1995).

Food choice, both today and in the past, is driven by a broad range of interacting factors, in which culture is centrally placed. This paper will assess convenience foods by means of a qualitative analysis of comparative product tests done by Belgium's largest consumer organisation Test-Aankoop/Test-Achats, and will focus on the influence of socially and culturally normative values between the years 1960 and 1995. The tests provide a unique insight into attitudes to convenience foods within an organisation that saw its role in Belgian consumer society as being both educator and guide. The organisation's views on health, food safety, modernity, tradition, control over ingredients and content, gender roles and taste shaped its attitude to the role and meaning of what food is supposed to be. The organisation thereby both guided and re-affirmed normative values with respect to convenience foods. Values, which are culturally constructed, have always played a key role in the acceptability of products. Cultural and social inhibitions and fears over control of convenience foods, which persist today, were central in the consumer organisation's representation of convenience food.

Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool.

The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item-total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5-1.5; and item difficulties ranged between -2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study's family-led process produced a tool, the FCCA, to measure families' experience of care with excellent psychometric properties.

Junkies in the House of the Lord.

The self-organization and mobilization of active drugs users is historically four decades old, but is rarely noted in the addiction, or drug policy literature. This piece looks closely at three European countries that have had varying degrees of success in organizing injection drugs users as key stakeholders in the development of non-criminalizing drug and reintegrating social policies. Indeed, the core questions here are about whether drugs users organizations can, or do have any impact in the improvement of drug treatment as well as the policies, which ultimately govern their lives. It should be noted that all of the groups studied included a few ex-users and/or non-user allies.

Advocating self-advocacy: board membership in a statewide mental health consumer organization.

Until 2008 Ohio Advocates for Mental Health was a statewide mental health advocacy organization run by mental health consumers and supportive of consumer-run organizations around the state. The author's tenure on the board entailed repeated engagement with questions of identity - self-identity, peer support through personal identification, and negotiation of public identities with provider groups and the state agency. These are fundamental to defining and legitimating the claims of mentally ill people not just for health care resources but for full participation as citizens in the public sphere.

Consumer-operated service program members' explanatory models of mental illness and recovery.

Incorporating individuals' understandings and explanations of mental illness into service delivery offers benefits relating to increased service relevance and meaning. Existing research delineates explanatory models of mental illness held by individuals in home, outpatient, and hospital-based contexts; research on models held by those in peer-support contexts is notably absent. In this article, I describe themes identified within and across explanatory models of mental illness and recovery held by mental health consumers (N = 24) at one peer center, referred to as a consumer-operated service center (COSP). Participants held explanatory models inclusive of both developmental stressors and biomedical causes, consistent with a stress-diathesis model (although no participant explicitly referenced such). Explicit incorporation of stress-diathesis constructs into programming at this COSP offers the potential of increasing service meaning and relevance. Identifying and incorporating shared meanings across individuals' understandings of mental illness likewise can increase relevance and meaning for particular subgroups of service users.

[Hungarian national plan and strategy for rare diseases]. / Ritka Betegségek Nemzeti Terve.

The rarity of low prevalence diseases and the lack of information, research, diagnosis, treatment and expert availability may mean that the people affected do not benefit from the health resources and services they need. Rare diseases are considered to have little impact on society as a whole, yet they pose serious difficulties for sufferers and their families. By the end of the last century, two robust achievements in science and technology, i.e. the biotechnological and informatics revolutions, have created a real base for global approach to rare diseases by coordinating the capacities for health care, biomedical research and drug development and pooling the very limited resources available both nationally and transnationally. The European Commission has taken a number of actions which help patients and professionals to share expertise and information across borders with the objective of reducing the number of people suffering from these types of diseases. These actions together form the legal basis of the European Union policy on rare diseases. Orphan or rare diseases are now one of the priorities in the public health programmes in European Union. In 2009, the document "European Union Council Recommendation on an action in the field of rare diseases" was released with the main goal to provide national health authorities with supporting tools for the development and implementation of national plans and strategies for rare diseases by the end of 2013. This recommendation adopted by European Union Member States, allows common policy guidelines to be shared everywhere in Europe. By September 2013 the Hungarian National Plan for Rare Diseases, a health policy strategy until 2020 was finalized. The present report gives a short view on the document.

[Rare diseases and their patient organization: the Hungarian Federation of People with Rare and Congenital Diseases]. / A ritka betegségek és hazai betegszervezetük: a Ritka és Veleszületett Rendellenességgel Élok Országos Szövetsége.

The aim of the author is to discuss special issues of rare diseases, with emphasis on circumstances present in Hungary, including those leading to the foundation of the non-governmental organization, the Hungarian Federation of People with Rare and Congenital Diseases. The author briefly reviews the most important findings of current international surveys which have been performed with or without the involvement of member associations of the Hungarian Federation of People with Rare and Congenital Diseases. At the level of medical and social services in Hungary, it is still "incidental" to get to the appropriate expert or centre providing the diagnosis or treatment. It is difficult to find the still very few existing services due to the lack of suitable "pathways" and referrals. There are long delays in obtaining the first appointment, resulting in vulnerability and inequality along the regions. The overall consequence is the insufficiency or lack of access to medical and social services. There are also difficulties related to the supply of orphan medication and the long duration of hospitalization. At the level of patient organizations financial scarcity and uncertainty are typical, combined with inappropriate infrastructural background and human resources. The poor quality of organization of patient bodies along with insufficient cooperation among them are characteristic as well. The author concludes that a National Plan or Strategy is needed to improve the current fragmentation of services which would enable patients and health, social and educational professionals to provide and use the best care in the practice. This would ensure all patients with rare diseases to be diagnosed within a possible shortest time allowing access to the care and support needed in time resulting in a decrease in burden of families and society.

Online recommenders' anthropomorphism improves user response to hedonic and benefit-based product appeals through the recommenders' perceived ability to learn.

Previous studies reveal the limited effectiveness of benefit-based and hedonic-based product recommendations provided by online recommenders, and recommender anthropomorphism is considered a remedy. This paper aims to investigate the positive effect of anthropomorphism by involving the online recommender's perceived ability to learn as a mediator. Based on schema congruity theory, perceived benefit/hedonic appeals appropriateness is considered a dependent variable. In Study 1, subtle anthropomorphic cues within an online recommender had a positive effect on perceived benefit-appeals appropriateness through the perceived ability to learn. Study 2 demonstrated the positive relationship between perceived anthropomorphism and perceived hedonic-appeal appropriateness, with the mediating role of the perceived ability to learn. The results advance the knowledge about consumer response to online recommenders from the perspective of anthropomorphism and schema congruity theory. Marketers and consumer organizations are advised on how to deal with online recommender systems providing benefit and hedonic appeals.

A watchdog to bite the giants?

Ray Moynihan explores the push for new powers and strong opposition to it.

Availability of exercise facilities and physical activity in 2,037 adults: cross-sectional results from the Swedish neighborhood and physical activity (SNAP) study.

BACKGROUND: Exercise facilities may have the potential to promote physical activity among residents, and to support an active lifestyle throughout the year. We investigated the association between objectively assessed availability of exercise facilities and objectively assessed physical activity outcomes, and whether time of year had a modifying effect on these associations. METHODS: A total of 2,037 adults (55% females) wore an accelerometer for seven days. Time spent in moderate to vigorous physical activity (minutes per day) and meeting the physical activity recommendations (yes/no) were used as outcome variables. Availability of exercise facilities was measured within 1,000-meter line-based road network buffers around participants' residential addresses using Geographic Information Systems. Socio-demographic variables and time of year were included as covariates in the analyses. RESULTS: Participants with ≥4 exercise facilities within their buffer zones spent 5.4 (confidence interval (CI) = 2.3-8.5) more minutes in moderate to vigorous physical activity per day, and had 69% higher odds (OR = 1.69; CI = 1.39-2.05) of meeting the physical activity recommendations, compared to those with no exercise facilities within their buffer zones. Time of year had no modifying effect on these associations. CONCLUSIONS: Our results show that objective availability of exercise facilities was associated with accelerometer-assessed time spent in moderate to vigorous physical activity and the odds of meeting the recommended levels of physical activity. Neighborhoods may be a logical and potentially significant venue for policy interventions aimed at increasing physical activity in the overall population.