Patient Organizations Research Articles

The relevance of different trust models for representation in patient organizations: conceptual considerations

BackgroundTrust within organizations is important for ensuring members’ acceptance of the organization’s activities and to expand their scope of action. Remarkably, Patient Organizations (POs) that often both function as a forum for self-help and represent patients on the health-political level, have been understudied in this respect. This paper analyzes the relation between trust and representation in POs. We distinguish between two models of representation originating from political theory: the trustee and delegate model and between two types of trust: horizontal and vertical trust.MethodsOur theoretical approach is illustrated with an analysis of 13 interviews with representatives of German POs.ResultsWe have found that the delegate model requires horizontal trust and the trustee model vertical trust. Both models: horizontal/delegate and vertical/trustee exist within single POs.ConclusionsThe representation process within POs demands a balancing act between inclusion of affected persons and strategically aggregating a clear-cut political claim. Trust plays in that process of coming from individual wishes to collective and political standpoints a major role both in terms of horizontal as well as vertical trust. Horizontal trust serves the communication between affected members, and vertical trust allows representatives to be decisive.

Screening, diagnosis, treatment, and follow up of hepatitis C virus related liver disease. National consensus guideline in Hungary from 15 October 2016

Treatment of hepatitis C is based on a national consensus guideline updated six-monthly according to local availability and affordability of approved therapies through a transparent allocation system in Hungary. This updated guideline incorporates some special new aspects, including recommendations for screening, diagnostics, use and allocation of novel direct acting antiviral agents. Indication of therapy in patients with no contraindication is based on demonstration of viral replication with consequent inflammation and/or fibrosis in the liver. Non-invasive methods (elastographies and biochemical methods) are preferred for liver fibrosis staging. The budget allocated for these patients is limited. Therefore, expensive novel direct acting antiviral combinations as first line treatment are reimbursed only, if the freely available, but less effective and more toxic pegylated interferon plus ribavirin dual therapy deemed to prone high chance of adverse events and/or low chance of cure. Priority is given to those with urgent need based on a pre-defined scoring system reflecting mainly the stage of the liver disease, but considering also additional factors, i.e., hepatic decompensation, other complications, activity and progression of liver disease, risk of transmission and other special issues. Approved treatments are restricted to the most cost-effective combinations based on the cost per sustained virological response value in different patient categories with consensus amongst treating physicians, the National Health Insurance Fund and patient's organizations. Interferon-free treatments and shorter therapy durations are preferred. Orv. Hetil., 2017, 158(Suppl. 1), 3-22.

OP79 Experimenting HTAi Patient Group Submission Template To Involve Patients

INTRODUCTION:The Health Technology Assessment International (HTAi) community recognises the importance of including patients’ views from published research and systematically obtaining input from patient organizations (POs). The HTAi's Patients and Public Involvement Subgroup has elaborated the Patient Group Submission Template for HTA (HTA Template) to facilitate the collection of evidence from patients via POs involvement. In 2015 AGENAS outlined a procedure to involve POs and tested the HTA Template within a Health Technology Assessment (HTA) report on dialysis.METHODS:The HTAi template was translated into Italian and adapted to the HTA report's specific information needs: to understand patients’ experiences with different dialysis modalities and any delivery problems at the regional level. Some questions were reformulated, others were cut and two different versions of the template were used. One was tailored to POs representatives and the other to individual patients selected with a purposive sampling procedure. We provided the HTA Template to POs appointed by an umbrella organization, Cittadinanzattiva, for their input and to identify other relevant POs to be involved. We identified a list of four associations, based on geographical location and typology of patients. Each POs representative completed the first template and administered the second one to, at least one patient for each five dialysis modalities. AGENAS staff provided support on a cascade basis POs collected and returned all templates.RESULTS:Researchers performed a thematic analysis of the answers received and this input was introduced in the HTA report within the chapter on Patients Aspects. Patients’ experiences closely corresponded to the ones in our qualitative literature's systematic review. However, PO representatives templates revealed an important problem of equity in access to different dialysis modalities across regions that we highlighted in the HTA report's recommendations.CONCLUSIONS:One of the template's limitations was related to self-administration. In some cases, a lack of familiarity with communicating one's views in writing may have affected the survey's informative power. This pilot also demonstrated the need for a more inclusive involvement procedure, as some important POs were not initially represented by the umbrella organization.

ABNORMAL NETWORK ORGANIZATION IN PATIENTS WITH MILD COGNITIVE IMPAIRMENT AND ALZHEIMER'S DISEASE

ABNORMAL NETWORK ORGANIZATION IN PATIENTS WITH MILD COGNITIVE IMPAIRMENT AND ALZHEIMER'S DISEASE

Comprehensive activities to increase recognition of primary immunodeficiency and access to immunoglobulin replacement therapy in Poland.

The study presents an overview on current situation of primary immunodeficiency (PID) patients in Poland and the 2014 annual report of the Polish Working Group for Immunodeficiency (PWGID). The group was set up in 2005 to improve diagnosis, treatment, and care of patients with immunodeficiencies and currently includes 15 pediatric and 13 adult centers. According to PWGID report 4099, PID patients are recognized in Poland, with the prevalence 10.6/100,000. The majority of them (54.2%) have predominantly antibody deficiency (PAD). In 2014 alone, a total number of 731 newly diagnosed individuals are reported. As predicted, the vast majority (70%) of them have PAD. Approximately one third of PAD patients require immunoglobulin replacement therapy. Within the entire cohort, an intravenous route of immunoglobulin therapy dominates (67.3%). However, within the age groups, distribution of immunoglobulin therapy varies and seems to be age related. Among children, 36% receive subcutaneous immunoglobulin, while with adults 26%. Analysis of numbers of either newly recognized or treated patients indicates its dynamic increase in recent years. This is the result of comprehensive activities by PWGID supported by governmental institutions, outstanding foundations, and patient's organization. • Immunoglobulins' treatment has substantially changed the life of individuals with PAD. Patients with common variable immunodeficiency (CVID) or X-linked agammaglobulinemia (XLA) can live and lead a near normal life. Early diagnosis of the disease followed by earlier implementation of appropriate treatment, including gammaglobulin replacement therapy, improves the quality of life. • Targeted efforts of health care professionals and government are required to optimize diagnostic and therapeutic approach for PAD. What is New: • Comprehensive activities of PWGID lead to better recognition of PID individuals and should improve reporting Polish PIDs to the ESID database. • Following the joint efforts of immunologists, patient's, and governmental organizations in the end of 2014, the Therapeutic Program for Treatment Adults with PID was introduced, leading to universal access to currently available treatment options and to improve the quality of life.

Incorporating patient perspectives in health technology assessments and clinical practice guidelines.

Ensuring patient involvement in health technology assessments (HTAs) and clinical practice guidelines (CPGs) is important. However, the goals and methods of such involvement are not always clear. The aim of this study was to 1) discover ways to involve patients in HTA and CPG processes, 2) describe challenges, and 3) find ways of informing patients about HTAs and CPGs in Finland. As part of a one-day seminar targeted at representatives of patient organizations (POs), 3, 1-h focus group discussions were held (n=20, with 14 PO representatives). PO representatives included real patients and health care professionals working in the organizations. The discussions were tape-recorded, transcribed, and thematically analyzed. Focus group participants highlighted the importance of gathering patient views from a group of patients, rather than individuals. Surveys through POs were the most frequently mentioned means of gathering patients' views. PO representatives reported interest in cooperating in HTA and CPG processes. The most often mentioned challenges were finding appropriate representatives for the target group and conveying information about HTAs and CPGs to patients. Multichannel communication was seen as essential. Furthermore the information should be readable, comprehensible, tailored, reliable, reusable, complementary, and timely. Possible strategies to involve patients in HTA and CPG processes were incorporating patient representatives in the CPG and HTA groups, offering timely possibility to participate, and ensuring reporting with clear and unambiguous language. The main identified challenge was finding appropriate representatives of the target group. The role of POs was seen as important particularly when informing the patients.

Recruitment procedures for descriptive socio-economic studies in rare diseases. The BURQOL-RD project

Background: Patient recruitment is a barrier that limits the power and validity of research findings in rare diseases (RD) research. We report the recruitment strategy carried out for the BURQOL-RD project in eight European countries with their corresponding results to gather socio-economic and health-related quality of life data of patients with 10 RD and their caregivers.Method: First, literature related to recruitment strategies for RD was reviewed, with a focus on descriptive studies and clinical trials. Second, the recruitment strategy for BURQOL-RD project was designed.Results: Findings from the literature showed that the most common recruiting strategies were the use of clinical and research networks and patient organizations (POs). The main BURQOL-RD recruitment strategy was driven, in every participant country, by the corresponding National Federation of RD by means of PO registries, e-mail and Internet-based questionnaires; providing a total of 3233 valid responses for the 10 selected RD in all participant countries.Conclusions: Our results provide inputs to improve the planning of recruitment activities in RD research. Internet-based questionnaires managed by POs using e-mail proved to be a useful strategy for patient recruitment.

Rare inherited disorders with renal involvement—approach to the patient

The list of rare inherited disorders with renal involvement is rapidly growing. Many are single gene diseases affecting children, but cases are not restricted to pediatrics and diagnosis is often difficult and delayed. The expanding use of next-generation sequencing techniques is expected to discover new diseases, to challenge the definition of rarity, to accelerate and shake up our diagnostic paradigms, to promote 'deep phenotyping', and ultimately improve disease ontology. Rare renal diseases are exemplary of a transition from pediatric to adult-type care and pluridisciplinary approach, necessitating cooperation between geneticists, nephropediatricians, adult nephrologists, other physicians, nurses, social workers, and dietitians. They have raised new ethical issues, not only in genetic counseling, but also in public health, regarding equity, and distribution of care. Patient's organizations have grown and have been very active to promote information and research. Efforts are underway to create interoperable patient's registries and ultimately worldwide networks gathering patients, researchers, clinicians, pharmaceutical industry, and health authorities. Progress in genetics and pathophysiological mechanisms will hopefully increase the number of efficient orphan medicinal products. Finally, new frontiers set by rare nephropathies may improve the understanding, treatments, and outcomes of more frequent renal diseases.

From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal

This article investigates how the engagement of patients’ organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a ‘politics of numbers’ for stating the fact of rare diseases as a major public health problem, and promoted patients’ critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a ‘politics of singularisation’. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this ‘politics of singularisation’ not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities.

Proteomic urinary biomarker approach in renal disease: from discovery to implementation

Biomarkers hold the promise of significantly improving health care by enabling prognosis and diagnosis with improved accuracy, and at earlier points in time. Previous results have indicated that single biomarkers are not suitable to describe complex diseases such as kidney disease. Here we provide an update on the progress of urinary proteomics-based studies and strategies to develop biomarker-based classifiers that tolerate instability and inconsistency of individual biomarkers. The examples focus on two major fields in nephrology: chronic kidney disease in the adult population and obstructive nephropathies in the pediatric population. When employed adequately, urinary proteomics demonstrates a clear value in kidney disease, indicating that the current status quo ruling for decades now could be changed by applying modern "omics" approaches. However, while research is able to deliver these useful tools for patient management, the issues associated with implementation are not yet solved. Active engagement of the relevant clinical professional societies, as well as patient's organizations, might help to implement these omics approaches that have shown a clear benefit for the patient.

Exploring the Positions of German and Israeli Patient Organizations in the Bioethical Context of End-of-Life Policies

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives--general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs.

Is there any impact of cognitive remediation on an ecological test in schizophrenia?

Introduction. Cognitive deficits are commonly reported in schizophrenia and have a significant impact on the daily life of patients and on their social and work inclusion. Cognitive remediation therapies (CRT) may enhance the capabilities of schizophrenia patients. Although social and work integration is the ultimate goal of CRT, previous studies have failed to carry out a detailed assessment of the effects on everyday life. Methods. Fifty-nine schizophrenia patients were randomised into two groups (remediation or usual treatment) to test the effects of a new remediation programme, which included both rehearsal and strategy learning, on cognitive functions. An ecological test was used to evaluate its transfer to daily living skills. Results. Cognitive improvements are revealed in CRT patients, mainly in memory and executive functions. Patients showing some deficiencies to perform the ecological test had better scores after the CRT. Moreover, they significantly improve their social activity scores. Conclusions. CRT would facilitate mental load monitoring by enhancing or reallocating cognitive resources, facilitating the patient's organisation and autonomy. The rehearsal learning approach improves the ability to carry out automatic operations that are less demanding in terms of cognitive resources, thereby increasing the resources available for acquisition and efficient use of strategies provided during the strategy learning approach.

Medical needs of cystic fibrosis patients and policies for fair co-operation between small and middle-sized companies and patient organizations

Background and methods Workpackage 4 of EuroCareCF brought together a group of small and middle-size companies (SMEs) with strong interest in drug development for cystic fibrosis (CF). The common interest of SMEs and patient organizations (PO) in mutually beneficial cooperation was assessed. This was achieved by identifying critical unmet medical needs of CF patients and by analyzing fields of cooperation between SMEs and POs. Results Over and above all, finding a cure for the disease is considered the most important unmet medical need by POs. However, preventing or slowing down any further deterioration of health and the alleviation of symptoms are also considered valuable objectives. Areas of co-operation with SMEs include the preparation and conduct of clinical trials and co-operation in the post-marketing authorization period. Conclusions If a policy of transparency and respect for the independence of POs is applied, SMEs and POs can develop mutually beneficial and sustainable co-operation.

Inpatient Palliative Care Consults and the Probability of Hospital Readmission

Many patients and their families have difficulty making decisions when confronted with complex medical problems. Often their expectations and hopes are beyond what medical science can deliver, and at times their desires seem to conflict with their treatment plans. Additionally, costly tests and treatments with little or no benefit are often explored. Inpatient palliative care consultation services for end-of-life-care planning can help patients navigate this complexity, arrive at a care plan consistent with their personal values, and be good stewards of precious medical resources. We conducted a study to assess the effect that one function of our organization's Inpatient Palliative Care Service-consultation regarding end-of-life-care planning-has on readmission rates. We believed that our study would show that interdisciplinary end-of-life-care planning improves resource use by reducing the probability and rate of hospital readmission. We retrospectively reviewed electronic records for Kaiser Permanente HealthConnect at Kaiser Permanente South Bay Medical Center in Harbor City, CA, for 200 consecutive patients referred to our Inpatient Palliative Care Service between November 2006 and February 2010, comparing hospital readmissions between two groups of patients. Members of both groups (100 patients in each) all had an Inpatient Palliative Care consult ordered for end-of-life-care planning; members of group A were seen solely by an inpatient palliative care registered nurse (RN), whereas members of group B were seen by an interdisciplinary team consisting of a physician, a bioethicist, a social worker, an RN, and a hospital chaplain. We found that with the post-team consultation, readmissions to the hospital per patient per six months after consultation decreased from 1.15 to 0.7 admissions per patient.

Patient organizations in Finland: increasing numbers and great variation

There is very little research on patient organizations (POs), even though their numbers and influence seem to be increasing. The purpose of this study was to describe the establishment, membership, size, organization, decision making and basic funding of national POs in Finland. National POs (n = 130) were identified from their umbrella organizations and by Internet searches. Data were collected from POs' web pages (87% of POs had one), Finland's Slot Machine Association (RAY, an important public financier of POs), a relevant survey done by a local TV-company, and interviews and written materials of POs. Some current national POs were established around the turn of the 19(th) century. The rate of establishment of new POs increased from the 1970s and particularly in the 1990s when POs were characterized by increasing specialization. POs focused on different patient groups and diseases and were founded by philanthropists, physicians, patients, parents and the drug industry. Members could be patients, patient relatives, health-care professionals and organizations. POs widely varied in memberships (20-145 000, in 2002) and in number of paid personnel (0-1395, in 2002), organizational structure and decision making. Interest groups and financiers were often represented in decision-making organs. Activities included mutual support and service production, and, increasingly, informing and lobbying. POs had wide domestic and international co-operation and networking. Drug industry marketing was visible on PO web pages. Budget sizes varied (4000-15 million euros, in 2001). The main public financier was RAY. The old national POs were large and part of national social and health care, but newer ones were often established for mutual support and lobbying. National POs are not uniform but characterized by great variation. The number of national POs is increasing suggesting tighter competition for financing and visibility in the future.

Effects of Urinary Incontinence, Comorbidity and Race on Quality of Life Outcomes in Women

We investigated the effects of comorbidity and urinary incontinence on both generic and incontinence specific quality of life outcome measures, and investigated whether the association between urinary incontinence and quality of life varies by race. Study participants were 2,109 women 40 to 69 years old randomly selected from an urban health maintenance organization and interviewed in person for a study of risk factors for urinary incontinence. The sample was racially diverse consisting of 48% white, 18% black, 17% Hispanic and 16% Asian-American women. In addition to incontinence, reproductive and medical history questionnaires, all participants completed the Medical Outcomes Study Short Form 36, a measure of health related quality of life. All participants with daily and weekly incontinence (29%) completed the Incontinence Impact Questionnaire, an incontinence specific quality of life measure. The health maintenance organization's inpatient and outpatient electronic databases were used to calculate a Charlson comorbidity index score for each participant. ANCOVA was used to produce a model adjusting for sociodemographic variables, comorbidity and incontinence frequency. The same model was run for each of 4 racial groupings to examine differences by race/ethnicity. Urinary incontinence is significantly associated with a decreased quality of life and those with more frequent incontinence have significantly lower quality of life scores. In our model the Charlson score, an objective measure of comorbidity based on hospital and physician records, also has a significant negative impact on quality of life. When comorbidity is controlled, incontinence frequency continues to have a significant negative association with quality of life except among the sickest women. For women with the greatest extent of comorbidity, incontinence frequency is not significantly associated with negative quality of life outcomes. We did not find clear patterns of variation by race. Urinary incontinence and comorbidity each have an independent and significant role in reducing quality of life outcomes for all but the sickest women.

Patient organizations and public health

In a stimulating paper in the British Medical Journal ,1 Show and Baker described the turmoil produced 15 years ago in the medical profession by what has since then been coined the ‘expert patient’; a patient whose specific knowledge about his disease challenges the power of the medical profession to decide alone the nature and the way his care should be organized. Several alternative models of the clinical encounter have emerged, focusing on the ability of a patient to cope actively with his disease, and emphasizing the ‘patient empowerment’ which is facilitated by the specific knowledge which the patient draws from his experience.2 A ‘patient collective identity’ sometimes emerges from the experiences shared between members of the same disease group. Patient organizations (POs) have been a strong factor in shaping these identities. As a recent special issue of Social Science and Medicine shows, some of these POs have got involved in activities (e.g. medical research or health planning) previously considered a professional prerogative.3 The community of public health researchers has not yet fully appreciated the impact these developments may have on their activities. While a recent viewpoint in this Journal seems to reflect a certain awareness of this ‘blind spot’, when it acknowledges the fact that ‘a new partnership to involve the whole society in reorienting health policies’ is necessary,4 POs are not mentioned as potential stakeholders. Sharing patients’ experiences with a specific disease has been the basis of the action of many POs. Until the 1980s, POs were frequently dominated by professionals in their boards or scientific councils, so they lacked the capacity to develop specific knowledge and shape their actions autonomously. Two sets of closely related factors can be considered as major drivers towards a better institutional recognition and autonomy. The first, fuelled by …

31 Self management of acute exacerbations

Ensuring patient involvement in health technology assessments (HTAs) and clinical practice guidelines (CPGs) is important. However, the goals and methods of such involvement are not always clear.The aim of this study was to 1) discover ways to involve patients in HTA and CPG processes, 2) describe challenges, and 3) find ways of informing patients about HTAs and CPGs in Finland.As part of a one-day seminar targeted at representatives of patient organizations (POs), 3, 1-h focus group discussions were held (n = 20, with 14 PO representatives). PO representatives included real patients and health care professionals working in the organizations. The discussions were tape-recorded, transcribed, and thematically analyzed.Focus group participants highlighted the importance of gathering patient views from a group of patients, rather than individuals. Surveys through POs were the most frequently mentioned means of gathering patients' views. PO representatives reported interest in cooperating in HTA and CPG processes.The most often mentioned challenges were finding appropriate representatives for the target group and conveying information about HTAs and CPGs to patients. Multichannel communication was seen as essential. Furthermore the information should be readable, comprehensible, tailored, reliable, reusable, complementary, and timely.Possible strategies to involve patients in HTA and CPG processes were incorporating patient representatives in the CPG and HTA groups, offering timely possibility to participate, and ensuring reporting with clear and unambiguous language. The main identified challenge was finding appropriate representatives of the target group. The role of POs was seen as important particularly when informing the patients.

28 Causes of acute exacerbations

Ensuring patient involvement in health technology assessments (HTAs) and clinical practice guidelines (CPGs) is important. However, the goals and methods of such involvement are not always clear.The aim of this study was to 1) discover ways to involve patients in HTA and CPG processes, 2) describe challenges, and 3) find ways of informing patients about HTAs and CPGs in Finland.As part of a one-day seminar targeted at representatives of patient organizations (POs), 3, 1-h focus group discussions were held (n = 20, with 14 PO representatives). PO representatives included real patients and health care professionals working in the organizations. The discussions were tape-recorded, transcribed, and thematically analyzed.Focus group participants highlighted the importance of gathering patient views from a group of patients, rather than individuals. Surveys through POs were the most frequently mentioned means of gathering patients' views. PO representatives reported interest in cooperating in HTA and CPG processes.The most often mentioned challenges were finding appropriate representatives for the target group and conveying information about HTAs and CPGs to patients. Multichannel communication was seen as essential. Furthermore the information should be readable, comprehensible, tailored, reliable, reusable, complementary, and timely.Possible strategies to involve patients in HTA and CPG processes were incorporating patient representatives in the CPG and HTA groups, offering timely possibility to participate, and ensuring reporting with clear and unambiguous language. The main identified challenge was finding appropriate representatives of the target group. The role of POs was seen as important particularly when informing the patients.

Suicide Attempts as Social Goal‐Directed Systems of Joint Careers, Projects, and Actions

In the present study we examined to what extent persons who attempt suicide describe their attempt in terms of social, joint processes. Psychotherapists interviewed 40 patients hospitalized in a general hospital for a few days after an attempted suicide. The content of the interviews was analyzed for the level of systemic processes the patients referred to (that is, action, project, and career). The most common processes to which the patients referred were relationship careers and projects and conflicts and argumentative actions. Our analysis indicates that a social process can be found at all levels of the patient's organization of the suicide attempt, within a system of goal-directed action, project, and career.