Applicant

Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF

Algemene gegevens / General Information Programma / Programme

:

GGZ-Programma GeestKracht

Subsidieronde / Subsidy round

:

Patiëntenparticipatie

Projecttitel / Project title

:

Top priorities of patients and families in fundamental psychiatric research Of GROUP and NESDA

Projecttaal / Project language

:

Engels / English

Geplande startdatum / Planned start date

:

01-10-2010

Geplande duur / Planned duration

:

18 maanden / months

Datum indienen / Date of application

:

25-06-2010

Projecttype / Project type

:

Toegepast onderzoek / Applied research

Vervolg eerder ZonMw-project / Continuation previously funded project ZonMw

:

Nee / No

Aanvrager / Applicant Dr. I.L.M.A. Baart T: 030 2731408 | F: | E: [email protected] VU medisch centrum Metamedica Postbus 7057 1007 MB AMSTERDAM

Projectleden / Project members Dr. T.A. Abma (Mede projectleider) Functie / Position: Universitair hoofddocent | Opleiding / Education: WO Studierichting / Subject: T: 020 4448218 | F: | E: [email protected] VU medisch centrum Metamedica Postbus 7057 1007 MB AMSTERDAM

Dr. I.L.M.A. Baart (Projectleider en penvoerder) Functie / Position: Universitair docent | Opleiding / Education: WO Studierichting / Subject: Psychologie T: 020 4446654 | F: | E: [email protected] VU medisch centrum Metamedica Postbus 7057 1007 MB AMSTERDAM

Drs. M. Visse (Uitvoerder) Functie / Position: Onderzoeker | Opleiding / Education: WO Studierichting / Subject: Gezondheidswetenschappen T: 020 4448218 | F: | E: [email protected] VU medisch centrum Metamedica Postbus 7057 1007 MB AMSTERDAM

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Prof. dr. G.A.M. Widdershoven (Bestuurlijk verantwoordelijke) Functie / Position: Afdelingshoofd | Opleiding / Education: WO Studierichting / Subject: Filosofie T: 0204448212 | F: | E: [email protected] VU medisch centrum Metamedica Postbus 7057 1007 MB AMSTERDAM

Projectgegevens / Project information Samenvatting / Summary Relevantie Tot nu toe bepalen subsidiegevers en wetenschappers de onderzoeksagenda’s van NESDA en GROUP. Patiënten en familieleden hebben nauwelijks invloed op deze agenda’s, terwijl de uitkomsten ervan hun leven diepgaand kunnen beïnvloeden. Het is daarom van groot belang dat het wetenschappelijke onderzoek in de psychiatrie gevoed gaat worden vanuit de ervaringskennis van patiënten en familieleden, en dat er methoden worden ontwikkeld en overgedragen die de betrokkenheid van patiënten en familieleden bij fundamenteel onderzoek bevorderen.Dat kan leiden tot onderzoeksagenda’s die beter passen bij de context van patiënten en familieleden en die een bredere sociale legitimatie hebben. Doel en vraagstelling 1. De ontwikkeling van een onderzoeksagenda van GROUP en NESDA waarin professionele en ervaringskennis zijn geïntegreerd; 2. bevordering van blijvende samenwerking tussen wetenschappers, patiënten en familieleden. De hoofdonderzoeksvraag is: welke top-tien onderzoeksprioriteiten vanuit patiënten-cliënten/familieleden perspectief kan in dialoog met wetenschappers van NESDA en GROUP worden ontwikkeld en uitgevoerd? Plan van aanpak Vanwege de asymmetrische relaties tussen wetenschappers en patiënten / familieleden is het van belang dat een onafhankelijke partij als facilitator van het agenderingsproces optreedt. Deze rol wordt vervuld door de afdeling Metamedica van het VUmc. De werkwijze die gevolgd gaat worden is gebaseerd op een dialoogmodel dat beoogt de perspectieven van wetenschappers en patiënten / familieleden te integreren in de ontwikkeling van een gedeelde onderzoeksagenda. De aanpak omvat verschillende stadia: 1. Exploratiefase 2. Consultatiefase 3. Prioriteringsfase 4. Integratiefase Ten slotte volgt de implementatie van de top prioriteiten die in de integratiefase zijn vastgesteld. Ad 1. In de exploratieve fase wordt de projectinfrastructuur opgezet, vindt een bekendmaking met het veld plaats en wordt het project bekend gemaakt op websites en in nieuwsbrieven. De stuurgroep zal bestaan uit vertegenwoordigers van Anoiksis, Ypsilon, ADF, Depressiecentrum, GROUP en NESDA, Schizofreniestichting en Trimbos instituut. De projectgroepen verantwoordelijk voor de uitvoering van de twee trajecten in zowel NESDA als GROUP zullen bestaan uit: projectleider, junior onderzoeker, onderzoeksassistent en twee patiënt / familielidonderzoekers. Ad 2. In de consultatiefase wordt de onderzoeksagenda van de wetenschappers en die van de patiënten /familieleden onderzocht in twee aparte trajecten. Met de wetenschappers van de consortia worden interviews gehouden en relevante documenten worden bestudeerd. Ook met patiënten en familieleden worden interviews gehouden, daarnaast wordt een aantal focusgroepen georganiseerd. Ad.3 In de prioriteringsfase zullen leden van Ypsilon en Anoiksis (en de HEE beweging) en ADF en Depressiecentrum een vragenlijst ontvangen, die is opgesteld vanuit de consultatiefase. De uitkomsten worden geanalyseerd in samenwerking met de besturen van Anoiskis, Ypsilon, ADF, Depressiecentrum (en HEE). Deze besturen besluiten over de formulering van de definitieve Top tien van onderzoek. Ad. 4 In de integratiefase wordt een dialoog georganiseerd tussen leden van de consortia en leden van Anoiksis, Ypsilon, ADF en Depressiecentrum (zomogelijk ook HEE). Het doel is een gezamenlijke top tien van onderzoek te formuleren die NESDA en GROUP zullen uitvoeren. Interviews, focusgroepen en bijeenkomsten worden opgenomen, getranscribeerd en geanalyseerd. Er verschijnt een Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF eindrapportage over zowel proces als inhoud van de dialoog. Implementatie Toptien onderzoeksprioriteiten vanuit het perspectief van patiënten en familieleden worden geïmplementeerd in het onderzoek van GROUP en NESDA door: 1. Nieuwe analyses van data uit de databases van de consortia. 2. Prioriteiten te formuleren in nieuwe onderzoeksvoorstellen. 3. Afhankelijk van nieuwe metingen die de consortia zullen doen, zullen prioriteiten daarin worden meegenomen. Nadat de prioriteiten zijn geformuleerd zal de stuurgroep een bijeenkomst organiseren waarin NESDA en GROUP hun onderzoeksplannen voor het onderzoek naar de Toptien prioriteiten zullen bekendmaken. Daar zal ook een nieuwe infrastructuur voor de begeleiding van deze onderzoeken worden opgezet. Bestaande structuren zoals de PFP-GROUP, de nieuwsbrief en websites van GROUP en NESDA en Anoiksis, Ypsilon, ADF en Depressiecentrum worden benut om de dialoog voort te zetten. Ook zullen conferenties en bijeenkomsten worden gebruikt om een groter publiek op de hoogte te houden van de voortgang. Over het project wordt een document gemaakt dat op websites en in media van patiëntenorganisaties kan worden gepubliceerd. Ten slotte zullen wetenschappelijke publicaties over dit traject verschijnen, zowel in een psychiatrisch tijdschrift als in het domein van onderzoek naar patiëntenparticipatie.

Trefwoorden / Keywords patientenparticipatie, psychiatrie, fundamenteel onderzoek

Samenwerking / Collaboration Samenwerking tussen onderzoek en praktijk / Cooperation between research and practice: Ja / Yes

Organisaties Anoiksis, Vereniging van Chronisch Pyschotische en Schizofrene Mensen Gansstraat 67A 3582 EC UTRECHT Maastricht Universitair Medisch Centrum+ Psychiatrie Postbus 5800 6202 AZ MAASTRICHT Trimbos Instituut Reïntegratie HEE! Postbus 725 3500 AS UTRECHT Universitair Medisch Centrum Groningen Universitair Centrum Psychiatrie Postbus 30001 9700 RB GRONINGEN Universitair Medisch Centrum Utrecht Psychiatrie Postbus 85500 3508 GA UTRECHT VU medisch centrum Psychiatrie Postbus 7057 1007 MB AMSTERDAM Ypsilon Centraal bureau Den Haag Prins Bernhardlaan 177 2273 DP VOORBURG Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Inhoud / Content Probleemstelling / Problem definition In 2004 the mental health programme of the Netherlands Organisation for Health Research and Development allocated a grant to the longitudinal (2013) research consortium GROUP (Genetic Risk and Outcome of Psychosis). GROUP is conducting research into the factors that protect and make individuals vulnerable to non-affective psychoses. The collaboration involves four academic medical centres and 33 mental health institutions; over 3,000 patients and family members are included as research subjects. In 2007 the GROUP board decided to set up a ‘Patients and Family Member Involvement Committee’ (PFP-GROUP). This committee comprised representatives of the patient organisation Anoiksis, the family member organisation Ypsilon, GROUP, and social scientists from the ‘Mental Illness, Genomics and Society’ project of the department of Medical Humanities, VU university medical center. The senior social scientist of that project (one of the applicants for this proposal) acted as facilitator between scientists and PFP members, and this resulted in an action paper that was accepted by PFP-GROUP, the board of GROUP, and Ypsilon and Anoiksis (Mans & Baart, 2008, 2009). Most fruitful in the process was the identification of common ground between the parties, which was found in the urge to know more about the onset and course of psychoses. This common ground has given rise to the wish to further intensify the collaborations between stakeholders. In the same year the Netherlands Study of Depression and Anxiety (NESDA) started with the recruitment of almost 3000 people with and without symptoms. This group will be monitored for a period of eight years. An inventory of the depression and anxiety symptoms will be made by using questionnaires and by examining biological and genetic factors. The Netherlands Organisation for Health Research and Development program GeestKracht is subsidizing the study. The main aim of NESDA is to determine the factors that influence the development and the long-term prognosis of anxiety and depression. NESDA is a cooperative project of VU university Medical Center, Leiden University, Medical Center/Leiden University, University Medical Center Groningen / Groningen, several mental health care institutions, Trimbos, NIVEL, WOK and several client organisations such as Angst Dwang & Fobie Stichting (ADF), Depressiecentrum and the Cliëntenbond. NESDA actively searched for ways to involve patients and clients in the development of the questionnaire: patients and clients were invited to attend focusgroups with the aim to articulate questionnaire items. In addition, NESDA informs patients, clients and their families about new research outcomes. NESDA experiences some difficulties, however, to create a systematic and sustainable dialogue with patients and their relatives and searches for ways to improve this. In both consortia steps have been taken to include patients and family members. Both consortia consider it is time to take the next step towards achieving sustainable practices for patient participation based on dialogue and equal collaboration leading to expert and experiential knowledge being integrated. Agreeing on research topics to be covered from a patient’s and a family member’s perspective is seen as highly relevant. The literature has demonstrated that collaborations may lead to more informed discussion between the parties, greater understanding by patients of technical issues, improved sensitivity to patients’ concerns in planning research, reduced barriers to broad participation, improved public profile of research, increased credibility of patient involvement and greater enthusiasm amongst patients and researchers for working together (Oliver et al 2004).

Relevantie / Relevance There are mixed views about the appropriateness and potential of involving consumers and patients in basic medical research (Barber et al., 2007). However, studies, and practical examples indicate that involving patients and consumers in fundamental research really is possible and fruitful (Callon & Rabeharisoa, 1999; Flinterman et al., 2001; Smit, 2009). Scientific knowledge reaches patients and family members and influences them. For example, in the current revision of the DSM classification gender and cultural issues will be taken into consideration explicitly which will have consequences for psychiatric care. Also, scientific developments have a profound influence on epistemologies of personhood in general, and on specific ideas about the origins of psychiatric disorders (Baart & Slob, 2008; Rose, 2007; Vidal, 2009). An example from GROUP is illustrative of this. Although patients consider the link between psychosis and trauma important, it was anathema to many psychiatric researchers since they do not wish to become embroiled in hypotheses suggesting that there may be a link between the parents' behaviour and psychosis in their children. However, this hypothesis has now resurfaced in the scientific community – in combination with a genetic susceptibility to psychosis – also at the instigation of patients. It is of the utmost importance that research in this domain is fed by experiential knowledge of patients and family members as it is expected to lead to more relevant scientific knowledge, greater societal acceptance and legitimation, and implementation of research findings. Another issue of relevance pertains to the considerable discussion over the past few decades about the disabling social barriers that are created for people with disabilities (Swain, et al.1994; Baart, 2002). These disabling barriers concern all kinds of disabilities, but the group of people with psychiatric conditions is of particular concern. Psychiatric disorders, and most of all psychoses, are highly stigmatised conditions. This project aims to eliminate disabling barriers and to create enabling environmental conditions. It hopes in doing so, to provide an understanding and knowledge of how enabling environments for good working relations can be created for participation in research agenda setting.

Kennisoverdracht, implementatie, bestendiging / Knowledge transfer, Implementation Consolidation Top-ten research priorities from the perspective of patients and family members will be implemented in the research of GROUP and NESDA. There are already agreements made in the PFP-GROUP and in NESDA that this will be possible. 1. New analyses of existing data of GROUP and NESDA will be possible. 2. Research priorities can be formulated into new research proposals. 3. Depending on the time-table and possibility of new data gathering rounds of the consortia, priorities can be included Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF there. After the top research priorities have been formulated, the steering committee will organise a meeting where GROUP and NESDA will present their plans for the realization of the Top ten research. An new infrastructure of (a) steering committee(s) will be set up in order to steer and evaluate the research into the top priorities. Existing structures such as the PFP GROUP, the newsletter and website of GROUP/NESDA and the websites of advocacy organizations will be used to continue the dialogue. Also conferences and meetings of advocacy organizations will be used to inform a larger public on the results of the agenda setting process and the research on the top priorities. Results will also be presented at the annual conferences GROUP and NESDA organize. An integrated document about the project will be prepared for publication on the websites of advocacy organizations. Also other patient organisations will be informed about the existence of this document and the possibility of publishing it on their websites, or referring to it. During the last months of the project a scientific publication on patient participation in fundamental psychiatric research will be prepared in collaboration with GROUP and NESDA scientists for scientific psychiatric journals. Finally, scientific publications will be prepared on patient involvement in fundamental research, and on patient involvement in the domain of psychiatry. These publications will be submitted to scientific journals in the domain of ‘patient participation’ in general such as Health Expectations and Health Care Analysis.

Doelstelling / Objective The project has two aims: a) to develop for both consortia an integrated research agenda (substance); and b) to foster enduring collaborations between stakeholders (process). Main research question: 1. Which research top-ten can in dialogue with GROUP/NESDA scientists be formulated from the perspectives of patients, clients and family members? Sub-questions: 2. To what extend do the research agenda’s of both consortia overlap and differ? Are there research topics which are relevant to take up on together? Which patient driven topics cannot be resolved by the consortia at this moment, why and what could be alternative paths? 3. How did the dialogue between these stakeholders in each consortium proceed? Was there an extension of perspectives? Did priorities shift along the process? 4. How did the agenda setting process differ between the two consortia given the history and social infrastructure and nature of the research system of the consortia, but also given the different populations and organization of patient groups? 5. Which factors hampered or fostered the dialogue between stakeholders ?

Plan van Aanpak / Strategy The approach in this project is based on a dialogue model for patient involvement in research agenda setting (Abma, 2005, 2006; Abma, et al 2009; Abma & Broerse, 2009). This model aims to develop a dialogue between different stakeholders to reach mutual understanding. Phases in the process The dialogic model follows an iterative process, and covers several phases in which the various perspectives of stakeholders are expressed and discussed. 1. 2. 3. 4.

Creating social conditions and literature research (exploration); Drawing up an inventory of perspectives separately with stakeholders groups (consultation); Ranking research priorities with separately (prioritisation); Heterogeneous dialogue with patients, family members and scientists together (integration).

The four steps are worked out below for both consortia. The processes will be organised during the same period. During the project, the social scientists responsible for the facilitating of the agenda setting process will function as an ethnographic researcher: attending meetings, reading the transcriptions of interviews, focus group discussions, and other documents produced in the project. Field-notes will be kept in a systematic order to be able to reflect on the process and answers the questions related to the process. Also a reflexive diary/logbook with personal observations will be kept (for catharsis and as an information source). The results of this ethnographic process will be discussed with project-teams (see below). In this way these results feed back into the research process, and the ethnographic process can be adjusted. Exploration (phase 1) During this phase key informants (N=20) will be interviewed to become familiar with the research fields, the research community, the consortium, the patient organizations and characteristics of the patient population. Furthermore a project infrastructure will be developed. Two project teams will be formed: one for NESDA and one for GROUP. Each team will consist of a senior social scientist researcher (project leader), a junior social scientist researcher (facilitating the project), a family member researcher (Ypsilon), two patient researchers (Ainoiksis, HEE, and ADF, Depressiecentrum, Clientenbond) and the facilitator of the consortium. Together they will decide on how to proceed in the project and process; Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF although they will execute different tasks, daily decisions about how to execute these tasks are taken by the project teams. The facilitator of GROUP will organise all actions with GROUP and NESDA. Patient research partners are patients or proxies who work along with professional researchers in a research team. A mixed research team has several benefits in terms of gaining entrée, trust, experiential knowledge (Abma, et al, 2009), but it has to be investigated whether this is possible for all patient populations included in this project. For the GROUP consortium this seems feasible. If enough patients can be recruited and selected for this task a training will be delivered to them, organized by Tools2use developed and run by a patient representative. The training focuses primarily on elements of empowerment and technical knowledge of scientific research. The steering committee will consist of representatives of both consortia GROUP and NESDA, relevant advocacy organizations, Centre for Society and Genomics, Trimbos institute, Schizofrenie stichting. The project leader will chair the steering committee that will meet four times in the course of the project. To make the project widely known texts will be written for relevant websites, newsletters and other material. Also, a plan will be developed for the information and communication management during the whole project. Consultation (phase 2) This phase aims to draw up an inventory of the research conducted by GROUP and NESDA, and the experiences (issues and concerns) and research themes that patients and family members consider important. Research agenda of scientists of GROUP and NESDA GROUP and NESDA are large scale, long term research consortia with different research projects and add- on research being carried out. Both consortia have a huge database; these data can be used for all kinds of new research questions, also research questions coming from patients and family members. Interviews will be carried out with researchers in both consortia to gain insight in the topics considered relevant for a research agenda. Data collection will continue till saturation is reached. At least 10 interviews (5 per consortium) will be planned. In addition relevant documents will be studied. The facilitator of GROUP will have an important role here (also for NESDA); her function until now was communication with research subjects, the general public and the facilitation of interaction between advocacy groups and scientists. Research agenda from patient and family members’ perspectives In order to draw up an inventory of themes and research questions, interviews and focus groups will be held with patients and family members. The interviews are semi-structured, using a topic list with topics related to issues, concerns and uncertainties in the lives of those involved with the illness. Respondents will be recruited via the advocacy organizations and eventually via client councils (in case of depression). Variation in terms of diagnosis, SES, sex, age and identity definition will be taken into account. The number of interviews will be determined by the point of saturation. It is expected that a minimum of 20 interviews (10 per consortium) will be sufficient. Interviews will be taped (after consent), transcribed and analysed. A ‘member check’ will also be performed. The data from the interviews will serve as input for the focus groups. Focus group discussions are a suitable method for participants to debate issues, to learn from each other’s perspectives and to construct in dialogue agreement on certain issues (Barbour & Kitzinger, 1999). We aim to arrange for 5 focus groups with members of the relevant advocacy organizations (HEE, Anoiksis, Ypsilon for psychosis; and ADF, Depressie centrum for anxiety and depression). The participants will be invited to give feedback to the issues from the interviews, and then to talk further about important issues and uncertainties in their lives and translate these into research themes. Focus group discussions will be taped, transcribed and analysed. This analysis will be checked (‘member check’) with the respondents who participated in the focus groups (Meadows and Morse, 2001). Prioritization (phase 3) During this step stakeholders will separately use the analyses of the prior phase to draw up their top-ten research themes. Questionnaires The relevant advocacy organizations will validate more widely, and prioritize the results of phase 2 in their respective organisations. We will draft a questionnaire using the input from phase 2, and post it on the websites of the relevant organizations; these organisations have ample experience in using their websites in this way. The questionnaire will be prepared with the research partners to check its validity and user-friendliness. The aim of the questionnaire is to validate and prioritise the research themes formulated in phase 2. The outcomes of the questionnaires will be analysed in collaboration with the respective boards of the advocacy organizations. These boards will then decide on the final top-ten research themes for their particular organisation. Integration (phase 4) During this step a dialogue will be conducted gathering together members from the consortia and relevant advocacy organizations. The aim is to formulate the shared top-ten research issues that can be conducted within GROUP/NESDA. The information (documents) that participants will use are: the top-ten for patients and family members, and the agenda prepared by scientists. Ideas will also be generated on translation of the research agenda into a research programme, its dissemination and implementation. The dialogue will be organised by the project team. The steering committee will also be consulted about how to proceed in this step. Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF Points for attention are: the number of discussions that will have to take place; the structure of the meetings; how many members will participate; who is the chair; what methods of discussion will be used; how participants will receive information. It is very important here that patients in particular are provided with the means to present their issues. Experiences with PFP-GROUP until now show that sufficient time is important (e.g. for thinking things over or for reconsidering opinions), and also the allocation of a power position in the structure of a discussion. Methods to equalise power relations are: not to include more scientists than patients (proportional deliberation); to select scientists with a positive attitude towards patient involvement; to have patients start with the presentation of their issues (Abma & Broerse, forthcoming). The meetings will be taped, transcribed and analysed. A ‘member check’ will take place. An end report will be written containing the list with the integrated research agenda, and background information (description of research themes and their relevance), as well as ideas about how to translate the agenda into a research programme, and how to disseminate and implement the research programme. Timetable 1. Exploration 2. Consultation 3. Prioritization 4. Integration 5. Publication, incl public version 6. Implementation Total duration

3 months 4 months 4 months 4 months 2 months 1 months 18 months

Expertise, voorgaande activiteiten en producten / Expertise, prior activities and products This project requires expertise on: how to achieve patient involvement; evaluating this involvement; action and qualitative research methods, such as interviewing and focus group discussions. In addition, substantial knowledge is required about fundamental psychiatric research; the development of experiential knowledge in psychiatry; social consequences of psychiatric genomics; developments in psychiatry in general. Substantial expertise is also required in the domains of experiential knowledge of patients and family members and ‘boundary knowledge’: the combination of expertise as a researcher and experiential knowledge in psychiatry. In addition peculiar competences are required for the role of facilitating the agenda setting process, such as acting as facilitator creating conditions for genuine dialogues and being able to enact a multiple partiality to remain acceptable for all stakeholders. The project leader Tineke Abma, senior researcher Ingrid Baart and researcher Merel Visse all work at the department of Medical Humanities of the VU university medical center/EMGO+ institute. They have ample expertise in the domains of: facilitating research agenda setting processes, achieving patient involvement, mental health care research, evaluation research, qualitative research methods, development of experiential knowledge, research into the meaning of developments in psychiatric genomics for various stakeholders and ‘boundary knowledge’. See appendix for more information. The GROUP board members and members of the steering committee are distinguished Dutch and international psychiatrists with expertise in the domain of psychiatric care, as well as psychiatric research. Anoiksis, Ypsilon, and the HEE patient movement that will also participate, are distinguished Dutch patient and family member organisations in the domain of psychoses with ample experience in participation in policy and healthcare. The NESDA executive board members are distinguished psychiatrists and researchers in the domains of psychiatry, primary care and clinical psychology. The board consists of professors in psychiatry and psychiatric epidemiology all coming from authoritative universities and mental health care institutions. The client organizations (ADF, Depressiecentrum and Cliëntenbond) are professional and trustworthy representatives of patients and clients with advisory committees of psychiatrists and psychologists. Tineke Abma is associate professor at the department of Medical Humanities of the VU university medical center, in Amsterdam. She has a degree in Nursing and Healthcare Administration and studied in the US as visiting fellow (1989-1990, 1994). Between 1990 and 2002 she was a staff member and later assistant professor at the institute for Healthcare Policy and Management, Erasmus University in Rotterdam. Between 2003 and 2008 she was associate professor and programme director for ‘Autonomy and Participation in Chronic Care’ at the department of Health, Ethics and Society at the University of Maastricht. Her scholarly work focuses on interactive and participatory evaluation methodologies and qualitative methods, and its grounding in dialogical ethics and hermeneutics. She is an opinion leader and leading author in the field of patient participation. Abma completed and coordinated a dozen research projects in the field of chronic care, including psychiatry, funded by ZonMw, NWO, charity funds and healthcare institutions. All these interactive research projects aimed to improve the quality of practices through inclusion and dialogue between as many stakeholders as possible. Several research agenda setting projects were conducted aiming at developing a methodology for patient participation (patients with kidney failure, spinal cord injuries, neuromuscular disease, mental disabilities), resulting in a handbook for researchers (Zeggenschap in wetenschap, 2007).In the field of psychiatry Abma has been engaged in a long-term movement to reduce the number of seclusions and coercion in the Netherlands and the third evaluation of the Forced Hospital Admission Law (Bopz). Ingrid Baart is assistant professor at the Department of Medical Humanities of the VU university medical Center, in Amsterdam. During her career she has worked in two capacities: as a researcher, and as a scientist responsible for the realisation of dialogue between science, policy and practice. She worked as a researcher and project/programme manager with several Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF organisations in the domain of health, at the Netherlands Organisation for People with Disabilities and Chronic Diseases, the Netherlands Organisation for Health Research and Development, Wageningen University and Research Centres and the Netherlands Institute for Mental Health and Addiction. In 2002 she obtained a PhD at the University for Humanistics with The Shaping of Identity in Illness. A study on chronic illness and subjectivity, which can be considered as research from a disability studies perspective. She was a member of the advisory board of the Netherlands Organisation for People with Disabilities and Chronic Diseases and worked there for some time as a secretary of study. In this capacity she started a project that aimed to develop disability studies in the Netherlands. She continued activities intended to foster the involvement of patients and people with disabilities in health research during her work at the ‘Patiëntenpraktijk’, an organisation focusing on collaboration between patient movements and healthcare research. She is currently involved in the coming into being of the disability studies programme of ZonMw and Handicap and Studie. In her recent research into the transformation of the meaning and management of psychiatric disorders as a result of the advent of psychiatric genomics, she initiated an action research project aimed at the involvement of patients (Anoiksis) and family members (Ypsilon) in the GROUP research. She also studied the social and cultural transformations that psychiatric genomics can bring about; and she studied (with focus group discussions) the transformations in illness explanations and identities of people with bipolar disorder, as influenced by psychiatric genomics. Merel Visse works as a researcher at the department of Medical Humanities,VU Medical Centre, VU University in Amsterdam. She has a degree in Healthcare Administration and since 1996 she specialized in the operations and implementation of interactive research methodologies. She applied these methods in several contexts, both in public and private organizations (e.g. health care, telecom and defense) with the purpose to support innovations and enhance daily practices. She has broad experience initiating dialogues between several stakeholders, among which client organizations in mental health care. Together with a collegue, she initiated and implemented knowledge management at the Military Mental Healthcare Organization. At the time, psychologists, psychiatrists and when possible their clients/patients, dialogued on a range of subjects. These subjects varied from new treatments and researchmethods (e.g. EMDR and neuro-imaging) to measuring the quality of care from a patient perspective (CQ-index). Currently, she works as a project leader of research projects where patients actively participate as research partners. Simultaneously she writes her dissertation. It focuses on how interactive methodologies support innovations.

Publicaties / Publications Abma, T.A., Broerse, J. (2010) Patient participation as dialogue. Setting research agendas, Health Expectations, forthcoming. Abma, T.A., Nierse, C. & Widdershoven, G.A.M. (2009) Patients as research partners in responsive research. Methodological notions for collaborations in research agenda setting, Qualitative Health Research, 19 (3): 401-415. Abma, T.A., Widdershoven, G.A.M. (2006) Responsieve methodologie. Interactief onderzoek in de praktijk, Den Haag: Lemma. ISBN: 10-90-5931-477-8. Abma, T.A. (2006) Patients as partners in health agenda setting research, Evaluation and the Health Professions, 29(4): 424-439. Abma, T.A. (2005) Responsive evaluation: Its meaning and special contribution to health promotion, Evaluation and Program Planning, 28: 279-289. Abma, T.A. (2005) Patient participation in health research. Research with and for people with spinal cord injuries, Qualitative Health Research, 15 (10): 1-19. Baart, I. (2002) Ziekte en zingeving. Een onderzoek naar chronische ziekte en subjectiviteit. Assen: Koninklijke Van Gorcum. Baart, I., Slob, M. (2008) From determining genes to complex networks. On the geneticization of mental illness. Den Haag, NWO, www.mcgprogramme.nl/mcgprogramme/essay_baart.html Baart, I. (2010) The contingency of psychiatric genomics is a Dutch reserach consortium, BioSocieties, 5 (2), 256-277. Mans, L., Baart, I. (2008) Voortgangsverslag patiëntenparticipatie in GROUP. Amsterdam: VUmc/Metamedica. Mans, L., Baart, I. (2009) Patiëntenparticipatie in genomicsonderzoek. Maandblad Geestelijke volksgezondheid, 64 (10), 854.

Referenties / References Abma, T.A., Broerse, J. (2010) Patient participation as dialogue. Setting research agendas, Health Expectations, forthcoming. Abma, T.A., Nierse, C. & Widdershoven, G.A.M. (2009) Patients as research partners in responsive research. Methodological notions for collaborations in research agenda setting, Qualitative Health Research, 19 (3): 401-415. Abma, T.A., Widdershoven, G.A.M. (2006) Responsieve methodologie. Interactief onderzoek in de praktijk, Den Haag: Lemma. ISBN: 10-90-5931-477-8. Abma, T.A. (2006) Patients as partners in health agenda setting research, Evaluation and the Health Professions, 29(4): Aangemaakt door ProjectNet / Generated by ProjectNet: 25-06-2010 15:51

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Subsidieaanvraag / Application Dossier nummer / Dossier number: 60-60100-98-250 DEFINITIEF 424-439. Abma, T.A. (2005) Responsive evaluation: Its meaning and special contribution to health promotion, Evaluation and Program Planning, 28: 279-289. Abma, T.A. (2005) Patient participation in health research. Research with and for people with spinal cord injuries, Qualitative Health Research, 15 (10): 1-19. Baart, I. (2002) Ziekte en zingeving. Een onderzoek naar chronische ziekte en subjectiviteit. Assen: Koninklijke Van Gorcum. Baart, I., Slob, M. (2008) From determining genes to complex networks. On the geneticization of mental illness. Den Haag, NWO, www.mcgprogramme.nl/mcgprogramme/essay_baart.html Barbour, R., Kitzinger, J. (eds.) (1998) Developing Focus Group research: Politics, Theory and Practice. London: Sage. Callon M., Rabeharisoa V. (1999) Le pouvoir des malades. L’Association française contre les myopathies et la recherche. Paris, Presse de l’Ecole des Mines. Flinterman, F., Teclemariam-Mesbah, R., Broerse, J. & Bunders, J. (2001) Transdisciplinarity: the new challenge for biomedical research. Bulletin of Science, Technology & Society, 21: 253-266. Mans, L., Baart, I. (2008) Voortgangsverslag patiëntenparticipatie in GROUP. Amsterdam: VUmc/Metamedica. Mans, L., Baart, I. (2009) Patiëntenparticipatie in genomicsonderzoek. Maandblad Geestelijke volksgezondheid, 64 (10), 854. Meadows L.M., Morse, J. Constructing evidence within the qualitative project. In: J. Morse, J. Swanson, A.J. Kuzel (eds.) (2001) The Nature of Qualitative Evidence. Thousand Oaks, CA: Sage. Novas, C. (2006) The political economy of hope: patients’ organizations, science and biovalue. Biosocieties, 01: 289-305. Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K. (2004) Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment,8(5):1-148. Rose N. The politics of life itself: biomedicine, power and subjectivity in the twenty-first century. Princeton NJ, Princeton University Press, 2006. Smit, C. (2009) Het verhaal van. Negen verhalen over patiëntenparticipatie in geneesmiddelenonderzoek. Drukkerij De Adelaar: Badhoevedorp. Swain, J., Finkelstein, V. French, S. & Oliver, M. ( eds.) (1994) Disabling Barriers - Enabling Environments. London: Sage. Vidal, F. (2009) Brainhood, Anthropological figure of Modernity. History of the Human Sciences, 22 (1): 5-36

Financiële gegevens / Financial data ZonMw budget Jaar / Year Kostenpost Personeel Materieel Implementatie Apparatuur Overig Totaal / Total

1

2

3

14,617 1,000 0 0 5,000 20,617

65,098 1,500 0 0 5,000 71,598

16,827 500 0 0 0 17,327

4

5 0 0 0 0 0 0

6 0 0 0 0 0 0

7 0 0 0 0 0 0

8 0 0 0 0 0 0

0 0 0 0 0 0

Totaal / Total 96,542 3,000 0 0 10,000 109,542

Co-financiering / Cofinancing Naam co-financier / Name of cofinancier Maastricht Universitair Medisch Centrum+ Universitair Medisch Centrum Groningen VU medisch centrum VU medisch centrum

Bedrag / Amount 1,500 4,421 8,686 1,500


Status Toegekend Toegekend Toegekend Toegekend

9


Bijzondere gegevens / Additional information Vergunningen / Permits Verklaring nodig / Statement required? Ja / Yes

Nee / No

METC DEC WBO

X X X

Verklaring verkregen / Statement obtained? Nog niet Ja / Yes Nee / No aangevraagd / Not applied yet X X X

Onderschrijvingen / Assents Ja / Yes

Nee / No

Code biosecurity / Code Biosecurity Code openheid dierproeven / Code Transparency of Animal Testing

N.v.t. / N.A. X X

Andere vergunningen / Other permits

Historie subsidieaanvraag / History grant application Deze aanvraag is eerder ingediend bij het programma / This grant application has previously been submitted to the ZonMw programme: Patiëntenparticipatie in onderzoek, kwaliteit en beleid

Projectnummer / Project number: 70-71800-98-009

Deze aanvraag is ook ingediend bij organisatie / This grant application has also been submitted to organization:

Ondertekening / Signatures Naam projectleider en penvoerder: I.L.M.A. Baart

Naam bestuurlijk verantwoordelijke: G.A.M. Widdershoven

Plaats en datum:

Plaats en datum:

Handtekening:

Handtekening:


10

Begroting voor subsidie-aanvragen ZonMw Wetenschappelijke instellingen

Dossiernummer Project: Titel Project: Topprioriteiten van patiënten en familieleden in psychiatrisch onderzoek Aantal maanden looptijd Project: 18

Alvorens u deze begroting invult, verzoeken wij u kennis te nemen van de Subsidievoorwaarden ZonMw, in het bijzonder bijlage 2. De geldende tabelbedragen conform het "Akkoord bekostiging wetenschappelijk onderzoek 2008" zijn te vinden op de website van ZonMw : www.zonmw.nl/………....

1. Personeel Tabelbedrag Soort aanstelling/functie Postdoc Postdoc Senior onderzoeker Junioronderzoeker NWP MBO NWP MBO

Aantal maanden 18 18 18 18 18 6

( onder "afrekening indien aantal maanden")

€ € € € € €

104.655,00 104.655,00 104.655,00 87.347,00 72.541,00 22.106,00

Totaal

Fte (%) 25% 20% 8% 40% 20% 20%

Totaal (€) € € € € € € € € € €

26.163,75 20.931,00 8.686,37 34.938,80 14.508,20 4.421,20 109.649,32

Er is een onderscheid tussen VSNU instellingen (o.a. Universiteiten) en NFU instellingen (o.a. UMC's). Voor VSNU instellingen gelden de volgende functies: Promovendi, Senior wetenschappelijk medewerker, Niet-wetenschappelijk personeel MBO, Niet-wetenschappelijk personeel HBO en Niet--wetenschappelijk personeel Academisch. Voor NFU instellingen gelden de volgende functies: Promovendi, PostDoc, (Arts)onderzoeker, NietWetenschappelijk medewerker MBO, Niet-wetenschappelijk medewerker HBO en Niet-wetenschappelijk medewerker Academisch. De per functie geldende salaristabellen voor VSNU en NFU instellingen vindt u op onze website www.zonmw.nl. 2. Persoonsgebonden benchfee (per aanstelling van wetenschappelijk personeel conform art.2.2 van bijlage 2, behorend bij de ZonMw subsidievoorwaarden) Omschrijving Benchfee postdoc Benchfee junior onderzoeker

€ €

Totaal (€) 5.000,00 5.000,00

Totaal

€

10.000,00

3. Materieel, Apparatuur, Verbruiksgoederen (gespecificeerd) Omschrijving Reiskosten personeel Faciliteiten focusgroepen Presentjes deelnemers onderzoek Tools2Use training patiënt/familielid onderzoekers Vacatiegelden

€ € € € €

Totaal (€) 1.500,00 1.000,00 1.000,00 1.500,00 1.000,00

Totaal

€

6.000,00

4. Implementatiekosten (gespecificeerd) Omschrijving

Totaal (€)

Totaal

€

-

5. Bijdragen van eigen instelling en derden Omschrijving NWP MBO 6 maanden gefinanciert door GROUP Focusgroepen gefinanciert door GROUP Focusgroepen gefinanciert door NESDA Eigen bijdrage VUmc afd. Metamedica Totaal

€ € € € €

Totaal (€) 4.421,20 1.500,00 1.500,00 8.686,37 16.107,57

Kostenpost 1. Personeel 2. Persoonsgebonden benchfee (per aanstelling cf. Subsidievoorwaarden) 3. Materieel, Apparatuur, Verbruiksgoederen (gespecificeerd) 4. Implementatiekosten (gespecificeerd) Totale lasten

€ € € € €

Totaal (€) 109.649,32 10.000,00 6.000,00 125.649,32

Minus: 5. Bijdragen van eigen instelling c.q. derden

€

16.107,57

Aan te vragen subsidie bij ZonMw

€

109.541,75

ZonMw budget

Akkoord Hoofdaanvrager:

Naam: Functie:

Datum:

Mw.dr. T.A. Abma Universitair hoofddocent

6-4-2010

Akkoord Financieel verantwoordelijke ontvangende instelling:

Naam: Functie: Telefoonnummer: E-mailadres:

Prof.dr.ir.J.Brug Directeur EMGO Instituut 020-4448180 [email protected]

Applicant

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