Assisting Faith-Based Organizations Increase Sense of Belonging during the Covid-19 Pandemic.

The Covid-19 pandemic has negatively affected the three basic needs of individuals. Faith-based organization leaders are carrying the additional weight of stewardship of members during these challenging times. Many Faith-based organization leaders feel a sense of responsibility to create environments where members feel a sense of belonging. Five considerations for Faith-based organization leaders hoping to increase belonging are discussed below. Specifically, low-cost options are presented that could be implemented in small-to-large Faith-based organizations.

New problems of a new health system: the creation of a national public policy of rare diseases care in Brazil (1990s-2010s). / Nuevos problemas de un nuevo sistema de salud: la creación de una política pública nacional de atención de enfermedades raras en Brasil (1990-2014).

This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil - mainly for claiming more funds for research on genetic diseases - and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology "rare diseases" and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.

En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología "enfermedades raras" y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988.

Prolonged Grief Disorder and Positive Affect Improved by Chinese Brush Painting Group in Bereaved Parents: A Pilot Study.

Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.

Issues in internet-based support for chinese-american breast cancer survivors.

Objective: The incidence of breast cancer in Chinese-Americans is increasing. This article aims to present and discuss the challenges encountered in implementing an Internet-based coaching/support program for Chinese-American breast cancer survivors and to provide direction for future Internet-based interventions targeting this specific population.Methods: The data were collected from (a) interventionists' diaries written during individual coaching/support sessions with survivors, (b) minutes taken during research meetings, and (c) written records of issues discussed during the interventions. The data were analyzed using content analysis.Results: The issues were categorized into eight themes. The following six themes were identified among the survivors: (1) low computer literacy, (2) ambivalent attitudes towards study participation (e.g., joining the project to maintain a harmonious relationship with the gatekeepers versus lack of trust in the project), (3) reticence to share opinions and experiences, (4) struggles with family affairs (e.g., intergenerational cultural dissonance), (5) overvaluing Traditional Chinese Medicine, and (6) specific participants' preferences (e.g., language, font size, timing). Among the interventionists, the following two themes were identified: (1) recruitment and retention of interventionists and (2) language barriers.Conclusions: Culture-specific challenges need to be considered when designing and implementing an Internet-based coaching/support program for Chinese-American breast cancer survivors.

Nuevos problemas de un nuevo sistema de salud: la creación de una política pública nacional de atención de enfermedades raras en Brasil (1990-2014) / New problems of a new health system: the creation of a national public policy of rare diseases care in Brazil (1990s-2010s)

RESUMEN En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología "enfermedades raras" y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988.

ABSTRACT This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil - mainly for claiming more funds for research on genetic diseases - and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology "rare diseases" and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.

Measuring coordination between women's self-help groups and local health systems in rural India: a social network analysis.

OBJECTIVES: To assess how the health coordination and emergency referral networks between women's self-help groups (SHGs) and local health systems have changed over the course of a 2-year learning phase of the Uttar Pradesh Community Mobilization Project, India. DESIGN: A pretest, post-test programme evaluation using social network survey to analyse changes in network structure and connectivity between key individuals and groups. SETTING: The study was conducted in 18 villages located in three districts in Uttar Pradesh, India. INTERVENTION: To improve linkages and coordination between SHGs and government health providers by building capacity in leadership, management and community mobilisation skills of the SHG federation. PARTICIPANTS: A purposeful sampling that met inclusion criteria. 316 respondents at baseline and 280 respondents at endline, including SHG members, village-level and block-level government health workers, and other key members of the community (traditional birth attendants, drug sellers, unqualified rural medical providers, pradhans or elected village heads, and religious leaders). MAIN OUTCOME MEASURES: Social network analysis measured degree centrality, density and centralisation to assess changes in health services coordination networks at the village and block levels. RESULTS: The health services coordination and emergency referral networks increased in density and the number of connections between respondents as measured by average degree centrality have increased, along with more diversity of interaction between groups. The network expanded relationships at the village and block levels, reflecting the rise of bridging social capital. The accredited social health activist, a village health worker, occupied the central position in the network, and her role expanded to sharing information and coordinating services with the SHG members. CONCLUSIONS: The creation of new partnerships between traditionally under-represented communities and local government can serve as vehicle for building social capital that can lead to a more accountable and accessible community health delivery system.

Cross-cultural Applicability of the 12-Step Model: A Comparison of Narcotics Anonymous in the USA and Iran.

OBJECTIVE: Narcotics Anonymous (NA), a nonprofessional 12-step fellowship for people seeking recovery from addiction, reports 27,677 meetings in the USA, where it was founded, but there is limited literature on its adaptability cross-culturally. We studied NA within the Islamic Republic of Iran to ascertain its relative adaptation in a different cultural setting. METHOD: We surveyed 262 NA members in Iran, supplemented by member interviews, and compared demographic and substance use-related characteristics of members, and also the nature of their respective involvement in NA, to the survey results of a previous US survey (n = 527). RESULTS: NA in Iran reports 21,974 meetings. The Iranian respondents surveyed differed relatively little (d < 0.50) from US members on demographics and prior ambulatory substance use disorder treatment, but did have fewer female members (means for Iran and US: 42.4 vs 39.0 years; 77% vs 87%; 6% vs 28%, respectively). They were, however, more involved in the fellowship (d > 0.50) in terms of reporting service as sponsors, experience of spiritual awakening, and achievement of diminished craving (scores of 1-10) (85% vs 48%; 95% vs 84%; 1.03 vs 1.89, respectively). Surveyed NA members in Iran publicized the fellowship with public (36%) and religious (20%) figures, and systematically worked the 12 steps in large sponsor-led groups ((Equation is included in full-text article.)= 19 members). CONCLUSION: NA, a 12-step program developed in a Western, predominantly Christian-oriented country, was adapted widely in the Islamic Republic of Iran, a setting different in culture, language, ethnicity, and religious orientation. The growth in its membership derives, in part, from specific innovations that may have broader applicability in other settings.

Psychological support for patients with cancer: evidence review and suggestions for future directions.

PURPOSE OF REVIEW: Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This article reviews contributions to that literature published since January 2017. RECENT FINDINGS: The majority of new psychological intervention research in cancer has used cognitive behavioural therapy (CBT) or mindfulness-based interventions. CBT has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for mindfulness-based interventions. A smaller number of trials using acceptance and commitment therapy, meta-cognitive therapy, dignity therapy and coaching have emerged, and whereas findings are promising, additional fully powered trials are required. Weaker evidence exists for counselling, support-based and narrative therapy interventions. SUMMARY: Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully powered, head-to-head comparison trials.

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal.

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.

Japan's healthcare policy for the elderly through the concepts of self-help (Ji-jo), mutual aid (Go-jo), social solidarity care (Kyo-jo), and governmental care (Ko-jo).

Elderly care is an emerging global issue threatening both developed and developing countries. The elderly in Japan increased to 26.7% of the population in 2015, and Japan is classified as a super-aged society. In this article, we introduce the financial aspects of the medical care and welfare services policy for the elderly in Japan. Japan's universal health insurance coverage system has been in place since 1961. Long-term care includes welfare services, which were separated from the medical care insurance scheme in 2000 when Japan was already recognized as an aging society. Since then, the percentage of the population over 65 has increased dramatically, with the productive-age population on the decrease. The Japanese government, therefore, is seeking to implement "The Community-based Integrated Care System" with the aim of building comprehensive up-to-the-end-of-life support services in each community. The system has four proposed elements: self-help (Ji-jo), mutual aid (Go-jo), social solidarity care (Kyo-jo), and government care (Ko-jo). From the financial perspective, as the government struggles against the financial burdens of an aging population, they are considering self-help and mutual aid. Based on Japan's present situation, both elements could lead to positive results. The Japanese government must also entrust the responsibility for implementing preventive support to municipalities through strongly required regional autonomy. As Japan has resolved this new challenge through several discussions over a long period of time, other aging countries could learn from the Japanese experience of solving barriers to healthcare policy for the elderly.

Increasing the Capacity of Primary Care Through Enabling Technology.

Primary care is the foundation of effective and high-quality health care. The role of primary care clinicians has expanded to encompass coordination of care across multiple providers and management of more patients with complex conditions. Enabling technology has the potential to expand the capacity for primary care clinicians to provide integrated, accessible care that channels expertise to the patient and brings specialty consultations into the primary care clinic. Furthermore, technology offers opportunities to engage patients in advancing their health through improved communication and enhanced self-management of chronic conditions. This paper describes enabling technologies in four domains (the body, the home, the community, and the primary care clinic) that can support the critical role primary care clinicians play in the health care system. It also identifies challenges to incorporating these technologies into primary care clinics, care processes, and workflow.

Cannabis: acciones desde la salud pública / No disponible

Se sistematizan las acciones a efectuar desde la salud pública en el consumo de cannabis. Previamente se resumen los conocimientos sobre el cannabis y las cuestiones que plantea; la situación internacional actual y las tendencias del consumo; los efectos en la salud; el marco legal actual y las implicaciones en salud pública; los clubes sociales de cannabis y su marco normativo en Cataluña. Las conclusiones son que el cannabis es la droga ilegal más consumida en el mundo y su uso comporta riesgos para la salud; debe desincentivarse el consumo de cannabis, de la misma manera que el del tabaco; existe una proliferación de asociaciones y sus clubes sociales de cannabis; debe informarse sobre los riesgos y consecuencias que el consumo de alcohol, tabaco, cannabis y otras drogas puede generar en la salud física y/o mental de los consumidores y/o potenciales consumidores; hay acuerdo en la necesidad de disminuir el impacto en la salud del consumo de esta sustancia en población vulnerable: menores, jóvenes y personas con trastornos mentales, entre otros; existe interés en separar el consumo de cannabis del de otras drogas; han de establecerse ejes de actuación que partan de las intervenciones preventivas de reducción de daños, que han demostrado ser efectivas en los últimos veinte años; los cambios normativos destinados a regular el consumo de cannabis deben insertarse en el marco de la legislación vigente; hay que estar atentos a los procesos de cambio en las políticas sobre drogas a nivel mundial; los cambios legislativos y normativos destinados a regular el consumo de cannabis y el resto de sustancias deben hacerse bajo la perspectiva de la Salud Pública y de los Derechos Humanos

Public health actions to face cannabis use are systematized. This paper includes current knowledge on cannabis and the issues raised; the current international situation and substance use trends; effects of cannabis on health; the legal framework and the public health implications; and social clubs of cannabis and regulatory framework in Catalonia. The conclusions are: cannabis is the most commonly used illicit drug in the world and cannabis use carries health risks; it should be discouraged cannabis use as tobacco use is discouraged; there is a proliferation of associations and social clubs of cannabis; people should be informed about the risks and consequences of using alcohol, tobacco, cannabis and other drugs; cannabis and substances of abuse can cause physical and mental harm on actual and potential users; there is agreement on the need to reduce the impact of cannabis use on health in vulnerable population: children, youth and people with mental disorders, among others; there is interest in separate the cannabis from other drugs market; preventive and harm/risk reduction interventions, proven effective in the past twenty years, have to be implemented; low changes designed to regulate cannabis have to be introduced in the existing legislation; we must be attentive to the processes of change in drug policies worldwide; and legislative changes to regulate the use of cannabis and other substances should be done under the perspective of public health and human rights

Exploring the Role of Faith-Based Organizations in Addressing Adolescent Relationship Abuse.

Adolescent relationship abuse (ARA) is prevalent with significant health and social consequences. Faith-based organizations could play an important role in ARA prevention and intervention. Studies on the role of faith-based organizations in interpersonal violence have focused on adult survivor perspectives rather than adolescents. Focus groups and interviews were conducted with faith-based organization leaders, parents, and youth. Findings highlight that church leaders, parents, and youth all expect that faith-based organizations can play a role in educating teens about healthy relationships. Divergent perspectives about how faith-based organizations should address adolescent sexuality and privacy need to be addressed.

State of spirituality-infused mental health services in Los Angeles County wellness and client-run centers.

Spiritual coping is associated with positive mental health outcomes for individuals with serious mental illness, yet spirituality-infused services are seldom offered in public sector mental health agencies. The Los Angeles County Department of Mental Health introduced a policy addressing spirituality in 2012. This study explored the breadth and degree to which spirituality-infused activities were being offered in 53 Los Angeles wellness and recovery centers after the policy was widely disseminated. More than 98 % of the centers offered options for spirituality-infused activities; one-third offered spirituality-focused groups. Los Angeles's progress may guide implementation of spirituality-infused services in other state or local public mental health systems.

Spirituality-based recovery from drug addiction in the twelve-step fellowship of narcotics anonymous.

BACKGROUND: Narcotics Anonymous is a worldwide fellowship that employs the Twelve-Step model for members dependent on drugs of abuse. The spiritual orientation of its program of abstinence has not been subjected to empirical study. METHODS: Responses of 527 American Narcotics Anonymous meeting attendees to a structured questionnaire were evaluated for the roles of cognitive and psychosocial aspects of spirituality in their recovery. RESULTS: Respondents had last used drugs or alcohol on average 6.1 years previously. They were found to be more oriented toward a spiritual than a formally religious orientation than probability samples of the general population. Aspects of membership such as affiliation toward other members and the experience of spiritual awakening were associated with lower rates of drug or alcohol craving, whereas scores on depression were associated with higher craving scores. CONCLUSIONS: Spiritual renewal combined with an abstinence-oriented regimen in Narcotics Anonymous social context can play a role in long-term recovery from drug addiction.

Abstinence from drugs of abuse in community-based members of Narcotics Anonymous.

OBJECTIVE: Narcotics Anonymous (NA) is an abstinence-based fellowship with more than 58,000 groups worldwide. There has, however, been little research reported on its members. This study was designed to clarify the nature of the participants in NA who are primarily abstinent, long-term members. METHOD: A protocol was implemented to survey members at 10 NA group meetings in three different states, through the cooperation of the NA World Service Office. A 51-item self-administered questionnaire, addressing key aspects of substance use and recovery, was anonymously completed by 396 respondents. RESULTS: Respondents were 71.5% male; the mean age was 38.1 years; 68.2% were White; and the principal drug problems comprised cocaine (28.5%), heroin (27.5%), other opiates (13.4%), methamphetamine (12.9%), alcohol (8.6%), marijuana (6.6%), and other stimulants (2.5%). Eighty-seven percent had prior treatment for a substance use disorder. On average respondents had first encountered NA at age 26.9, they had been abstinent an average of 5.7 years at the time they filled out the questionnaire, and 47.5% had served as sponsors. Ninety-four percent designated themselves as spiritual, and only 29.6% designated themselves as religious. CONCLUSIONS: NA offers support for long-term abstinence from diverse misuse of drugs among users of different backgrounds.

An integrative review of supportive e-health programs in cancer care.

PURPOSE: This integrative review aims to gather more knowledge of the design of supportive e-health interventions for patients diagnosed with cancer and subsequently analyze and synthesize that knowledge in a potential explanatory model for those interventions. METHODS: PubMed, CINAHL and PsycINFO were searched for abstracts dating from 2000 through to June 2012. Eligible articles concerned education or support for adult cancer patients, and were provided either on the Internet or using CD-ROM or DVD. RESULTS: Twenty-eight quantitative studies constituted the final sample, revealing that supportive e-health programs in the field of cancer are being used and are helpful to individuals despite their age, gender, literacy level and disease-stage. Each e-health program usually constitutes a single service with a variety of multimedia features, which leads to different designs yet with common outcomes. Some of these outcomes are theoretically explained, although a structure that links all aspects of the intervention is rarely found. Moreover, different designs have also been adopted for testing the interventions' effectiveness. CONCLUSION: E-health interventions that allow supportive needs to be satisfied are leading to positive effects for individuals with different preferences and priorities. Even though several communalities could be found across interventions, methodological aspects of design, implementation and evaluation still vary, leading to some inconsistency. Models and applied theories are needed to clarify such issues, thus enhancing the credibility and applicability of supportive e-health programs across target populations.

Evaluation of an ongoing psychoeducational inflammatory bowel disease support group in an adult outpatient setting.

Previous studies assessing efficacy of support groups for patients with inflammatory bowel disease showed mixed results in terms of attendance and overall effectiveness. In this study, researchers evaluated the use of an ongoing open psychoeducational support group for adult patients with inflammatory bowel disease in an outpatient tertiary setting. The sample consisted of 18 adults who have attended more than 2 meetings of the support group. Topics addressed in the support group include complementary medicine, diet and nutrition, the psychological impact of inflammatory bowel disease, medication and side effects, and insurance/disability. Participants were asked to complete the Client Satisfaction Questionnaire, Multidimensional Support Scale, 11 general demographic questions, and a brief open-ended qualitative questionnaire developed by the researchers. Results demonstrated that participants reported very high satisfaction with the support group and rated the adequacy of peer support from others with inflammatory bowel disease higher than support from family/friends and professionals. A majority of group members reported joining the group for mutual support and education; this expectation was met through the psychoeducational structure of the group. This study demonstrates the potential for success of an ongoing psychoeducational inflammatory bowel disease support group for adult patients and their caregivers.

Quality of life in vitiligo patients.

Quality of life is defined by the World Health Organization as "individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns." Often overlooked in the past, it is nowadays considered, in a more holistic view of medicine, a decisive factor to understand the impact of diseases and improve the quality of medical care. Such evaluation is particularly relevant for dermatological diseases, because visibility of the lesions can significantly affect self-esteem and social relationships. Vitiligo represents an emblematic case: often disfiguring and located in visible areas, confused in the past (and, in many world regions, even in the present) with leprosy, often perceived by physicians as a harmless, purely cosmetic problem, it significantly decreases the quality of life of affected persons. After a brief overview on definition, usefulness and methods for the assessment of quality of life, the authors examine the peculiarities of its relationship with skin diseases, particularly vitiligo. The state of the art of knowledge and research in this field is presented, together with data showing usefulness and positive results of a multidisciplinary approach, which adequately keeps into account perceived quality of life, on patient's satisfaction, adherence to treatment protocols and, ultimately, better outcome of treatments. In this context, an important role can be played by support communities, groups of patients and dedicated associations and societies, connected through modern communication networks like the Internet.