1 Biography Name: Born: Work address: Nationality: Mette Terp Høybye June 29, 1973 in Aarhus, Denmark CPK, Silkeborg Regional Hospital, Falkevej 1-3, 8600 Silkeborg, Denmark Danish Education University of Copenhagen Health Sciences Ph.D University of Copenhagen Anthropology M.Sc University of Southern Denmark Middle Eastern Studies 1 year subsidiary course 1998 University of Aarhus Ethnography BA 1999 Research experience Research positions 2013 Senior researcher, Interdisciplinary Research Unit, Elective Surgery Center, Silkeborg Regional Hospital, Denmark. (Research and development of an interactive platform for pain management; Research and testing the use and experience of animated avatars and web-based interventions in patient communication and education) Researcher, National Institute of Public Health, University of Southern Denmark. (Research concerns an anthropological study of how Danish municipalities practice and organize health promotion and disease prevention targeting social inequalities in health) Post.doc., University of Southern Denmark, Institute of Public Health, Unit of Health, Man and Society. (Research concerned hospital design in relation to the experience of healing in cancer patients. Work further included teaching assignments, master and PhD level courses, PhD and Master student supervision) Visiting scholar at Stanford University School of Medicine, Department of Psychiatry and Behavioral Sciences, Center on Stress and Health. (Research focused on the use and development of new virtual technologies to support positive health behaviors in adolescent and young adult cancer patients The BE Community Project. IRB review. Fundraising. Pilot testing of the virtual platform) Visiting scholar at Stanford University, Human Sciences and Technologies Advanced Research Institute (H-STAR). (Creating local network and funding for The BE Community Project) Conducting the qualitative part of the scientific evaluation of the Health Center for Cancer Patients, the Municipality of Copenhagen, as part of the scientific evaluation team from the Department of Psychosocial Cancer Research, the Danish Cancer Society Visiting PhD student at the Institute of Anthropology, University of Copenhagen PhD student at the Department of Psychosocial Cancer Research, Institute of Epidemiological Cancer Research, the Danish Cancer Society. (PhD research was a study of 921 Danish cancer survivors, randomized for an internet support intervention or control, drawing on methods from both epidemiology and anthropology [lifestyle and psycho-metric questionnaires and ethnographic methods]) Research assistant at the Department of Psychosocial Cancer Research, Institute of Epidemiological Cancer Research, the Danish Cancer Society.
2 Ethnographic fieldwork 2012 Ethnographic fieldwork in the Health Services Administrations of selected Municipalities in Denmark studying the production of public health policy worlds, i.e. the on-going efforts by policy-makers and administrators to produce and enact policies and interventions that will improve the public s health, with a particular focus on how the work seeks to reduce social inequality in health. Using participant observation and interviews Ethnographic fieldwork at the Department of Hematology, University Hospital Odense, concerning the embodiment of hospital environment in relation to the experience of healing in cancer patients. Using participant observation, unstructured interviews and visual methods (photography and video) User-driven innovation workshops and pilot-testing of BE Community platform with adolescent and young adult cancer patients, Aarhus University Hospital Ethnographic fieldwork in internet cancer support groups for cancer survivors in Denmark. (Semi-structured interviews, online focus-group interviews, ethnographic fieldwork on-line, participant observation on and off the internet) Ethnographic fieldwork on the Scandinavian Breast Cancer Mailing list (SCAN-BC-list) and on Cancer Survivors Gathering Place (American based web-site with discussion board). (Semistructured interviews, online focus-group interviews, ethnographic fieldwork on-line, participant observation). Awards 2012 Early Career Award from International Society of Behavioral Medicine (ISBM) 2009 Visiting scholarship at Stanford University, USA, from the Danish Agency of Science, Technology and Innovation (DASTI). Grants (in own name >50,000 dkr) 2011 Bilateral network grant from the Danish Agency of Science, Technology and Innovation (DASTI) International Network Program for bilateral network activities in R&D Research grant from the Danish Child Cancer Foundation The Carlsberg Foundation researchers stipend for traveling Research grant from the Milieu for Humanistic Cancer Research, Denmark Research grant for traveling from the Scientific Committee of the Danish Cancer Society Research grant from the Psychosocial Research Committee of the Danish Cancer Society. Current international collaboration AARON (Atoms of Alliance Research-Oriented Network on e-interventions for ANTDG behaviors); international research network on e-interventions initiated by Dr. Anne H. Berman, Karolinska Institute. Leeds Institute of Health Sciences, Faculty of Health and Medicine, University of Leeds; Associate Professor Dr. Bridgette M. Bewick. Stanford Center on Stress and Health, Department of Psychiatry, Stanford School of Medicine, Stanford University, California, USA. Other professional experience 2013 Organizer and chair of panel at the 112th AAA American Anthropological Association Annual meeting: Shaping the Health of Future Publics: Anthropological Engagements With Public Health Policies and Interventions Chicago, USA, November Workshop organizer, Explosions of Virtuality - hybrid technologies of self, innovation and management, Stanford University, Stanford, USA, October
3 The workshop brought together 36 Danish and American researchers, developers and industry people to work with and discuss questions about how virtuality may form innovative forms of self-management and how the concept of virtuality re-configures our understanding of human-technology interactions. Video summary of the event: Founder and manager of The BE Community -project, Stanford University, USA (http://scopeblog.stanford.edu/2010/11/becommunity/)(http://www.stanforddaily.com/2010/10/28/be-community-designed-foryoung-cancer-patients/) Virtual behavioral intervention to support adherence to treatment and alleviate social isolation in adolescent and young adult cancer patient. Project conceptualization, team management, fundraising, project coordination Project coordinator (data production and management of qualitative research) in the evaluation of the Health Center for Cancer Patients, the Municipality of Copenhagen. Final evaluation report: Project coordinator of the research project FOCARE (Research in Cancer Rehabilitation) at the Department of Psychosocial Cancer Research, Copenhagen. Organization of randomization procedures with selected hospitals, data production and management. Final research report: 4FC8ACB8991F/0/Rapport_10aars_forskning_og_udvikling.pdf Consultancy work External consultant on health research issues to the Danish Attaché of Science, Innovation and Technology in Silicon Valley, USA. (Attaché Lars Beer Nielsen) Consultancy work - Katalabs Inc., San Francisco, USA - developing product and business ideas for a 3D virtual environment health service to be integrated with existing health programs on the internet to increase the perception of presence, engagement and motivation among health consumers and patients Consultancy work - Landsforeningen til Støtte ved Spædbarnsdød (Association for parents who lost an infant) - consulting on the development of online presence and user features. Academic supervision PhD level: 2013 Project advisor to PhD candidate Susanne Thayssen, University of Southern Denmark. Project: Use of a patient questionnaire for assessing the need for rehabilitation in cancer patients. A qualitative study of patients and General Practitioners experience Project advisor to PhD candidate Lene Østergaard Jepsen, University of Southern Denmark. Project: Semi-outpatient treatment of patients with acute leukemia. Patient experience from the perspective of rehabilitation Project advisor to PhD candidate Louise Jørgensen, University of Copenhagen. Project: Lower urinary tract symptoms among women living in Region Zealand? and Region Northern Germany a study about their health related quality of life and their help-seeking behaviour to their General Practitioner Project advisor to PhD candidate Connie Timmermann, University of Aarhus. Project: Patient experience of the course of treatment in an acute hospital - senses, coping and transitions. Master level: 3
4 2012 Advisor on thesis Lene Nørgaard, Master in Rehabilitation, University of Southern Denmark Advisor on thesis Charlotte Haase and Lene Møller Hansen, Master in Rehabilitation, University of Southern Denmark. Invited talks and keynote lectures 2014 Interactive technology to optimize pain management [Interaktiv teknologi til optimering af smertebehandling]. Workshop for central pain management facilitators [Temadag for smertenøglepersoner], University Hospital Aarhus, Skejby Universitetshospital, January; Aarhus, Denmark Internet based support groups for cancer patients [Internetbaserede støttegrupper til kræftpatienter]. 2nd Aarhus Workshop in Breast Surgery, Skejby Universitetshospital, May; Aarhus, Denmark Healing Environments in Cancer Survivorship. Talk at the European Cancer Rehabilitation & Survivorship Symposium, September; Copenhagen, Denmark Inspiring youth to engage in cancer treatment through a multi-user online environment. Talk at 3 rd Annual Virtual Worlds and Social Games for Health Day at the 6th Games for Health conference, May; Boston, USA Randomized study of the use of internet-based support groups in Danish cancer survivors. Talk at Virtual Medical Environments: Opportunities and Barriers workshop at Stanford University, March; Stanford, USA Internet based learning and accessibility in psycho-oncology. IPOS 8th World Congress 2006, Venice Information technology tools in support of patient communication. European Cancer Conference/ ECCO-13, EONS/ ESO symposium. Paris. Censor/ external examinator Censor at educations of Public Health and Master of Health Services at University of Southern Denmark, Univerisity of Aarhus and University of Copenhagen. Peer Review responsibilities Journal of Medical Internet Research (JMIR); Health Education Research; Psychology and Health; Supportive Care in Cancer; British Journal of Cancer; Acta Oncologica; Social Science and Medicine; British Medical Journal (BMJ); Psycho-Oncology; Journal of Health Psychology; Women and Health; Cancer Control; Journal of Computer-Mediated Communication (JCMC); Tidsskrift for Sundhed og Sygdom; Tidsskriftet Antropologi. Professional networks Member of International Psycho-Oncology Society (IPOS) Member of Dansk Selskab for Psykosocial Medicin (DSPM); Danish chapter of the International Society of Behavioral Medicine. Member of Dansk Etnografisk Forening; (Danish ethnographic society) Research publications Peer-reviewed papers 1. Uhrenfeldt L and Høybye MT. Lived experiences and challenges of older surgical patients during hospitalisation for cancer: An ethnographic fieldwork. International Journal of Qualitative Studies 4
5 on Health and Well-being, In Press. 2. Timmermann C, Uhrenfeldt L, Høybye MT, Birkelund R. A palliative environment: Caring for seriously ill hospitalized patients. Palliative & Supportive Care, In Press. 3. Høybye MT and Tjørnhøj-Thomsen T. Encounters in cancer treatment. Intersubjective configurations of a need for rehabilitation. Medical Anthropology Quarterly. Early Online version; DOI: /maq Apple C, Johansen C, Deltour I, Frederiksen K, Hjalgrim H, Dalton SO, Dencker A, Dige J, Bøge P, Rix BA, Dyregrov A, Engelbrekt P, Helweg E, Mikkelsen OA, Høybye MT, Bidstrup PE. Risk for hospitalization for an affective disorder in adulthood after early parental death: A Danish cohort study. Epidemiology, 2013; 24(4): Høybye MT. Healing environments in cancer treatment and care. Relations of space and practice in hematological cancer treatment. Acta Oncologica, 2013; 52: Rottmann N, Dalton, SO, Bidstrup PE, Würtzen H, Høybye MT, Ross L, Christensen J, Frederiksen K, Hansen DG, Johansen C. No improvement in distress and quality of life following psychosocial cancer rehabilitation. A randomized trial. PsychoOncology (5): Kjaer, TK, Johansen C, Ibfeldt, E, Christensen, J, Rottman N, Høybye, MT, Ross, L, Svendsen, M, Dalton, SO. Impact of symptom burden on health related quality of life of Danish cancer survivors in a Danish cancer rehabilitation program: A longitudinal study. Acta Oncologica, 2011; 50: Ibfelt E, Rottmann N, Kjær T, Høybye MT, Ross L, Frederiksen K, Johansen C, Dalton SO. No change in health behavior, BMI or self-rated health after a psycho-social cancer rehabilitation: results of a randomized trial. Acta Oncologica, 2011; 50: Høybye MT, Dalton SO, Deltour I, Bidstrup PE, Frederiksen K, Johansen C. Effect of Internet peer support groups on psychosocial adjustment to cancer. A randomized study. British Journal of Cancer, 2010; 102: Høybye MT, Dalton SO, Christensen J, Ross L, Kuhn KG, Johansen C. Social and Psychological Determinants for Participation in Internet Based Cancer Support Groups. Supportive Care in Cancer, 2010; 18: Carlsen K, Høybye MT, Dalton SO, Tjønneland A. Social inequality and incidence of and survival from breast cancer in a population-based study in Denmark, Eur J Cancer, 2008; 44(14): Høybye MT, Dalton SO, Christensen J, Larsen LR, Kuhn KG, Jensen JN, Carlsen K, Johansen C. Research in Danish cancer rehabilitation: Social characteristics and late effects of cancer among participants in the FOCARE research project. Acta Oncologica, 2008; 47: Høybye MT, Johansen C, Tjørnhøj-Thomsen T. Online interaction. Effects of storytelling in an internet breast cancer support group. PsychoOncology. 2005; 14(3): Books and book chapters 1. Beaulieu, A and Høybye, MT. Studying Mailing Lists: text, temporality, interaction and materiality at the intersection of and the web. In: The Handbook of Emergent Technologies in Social Research, edited by Sharlene Hessse-Biber, Oxford University Press;
6 Dissertations 1. Høybye, MT. Internet based support in the rehabilitation of Danish cancer survivors. A randomized anthropological and epidemiological study. University of Copenhagen, Faculty of Health Sciences. PhD dissertation; Høybye MT. Storytelling of Breast Cancer in Cyberspace. On-line counteractions to the isolation and demeaning of illness experience Institute of Anthropology, University of Copenhagen; Science shop Publishing (ISBN: ). Research presentations (peer-reviewed) 1. Rod, MH; Holt, DH; Høybye, MT: Public Health Policy Worlds: Exchanging means and ends in intersectoral policymaking processes. Abstract presented at 112th AAA American Anthropological Association Annual meeting, Chicago, USA, November Høybye, MT & Rod, MH: Access to intervene. Ethnographic explorations of inequalities in health as an object for public intervention. Abstract presented at 112th AAA American Anthropological Association Annual meeting, Chicago, USA, November Høybye, MT & Rod, MH: Setting (and negotiating) standards for health promotion. A qualitative study of intersectoral health promotion efforts in Danish municipalities. Abstract presented at 21st IUHPE World Conference on Health Promotion, August, Pattaya, Thailand. 4. Uhrenfeldt L, Høybye MT. Challenges in well-being among old surgical patients during hospitalization for cancer. Abstract presented at the 32nd International Human Science Research Conference, Aalborg, Denmark, August Høybye MT. Internet based peer-support in cancer ambiguities of presence, community and distance. Abstract presented at the 34th Annual Meeting & Scientific Sessions of the Society of Behavioral Medicine, San Francisco, USA, March Jepsen LØ, Høybye MT, Hansen DG, Friis LS. Outpatient management of acute leukemia patients. The experience of patients and their relatives in a rehabilitation perspective. Poster presented at the European Cancer Rehabilitation & Survivorship Symposium, Copenhagen, September Høybye MT. Virtual engagement. Reflections from an early pilot-testing of a virtual intervention for young cancer patients thoughts on design, presence and usability of e-health interventions to promote wellbeing. Abstract presented at symposium at the 12th International Congress of Behavioral Medicine, Budapest, September Timmermann C, Uhrenfeldt L, Høybye MT, Birkelund R. Hospitalized Patients Experience of Aesthetic and Homely Sensory Impressions. Abstract presented at International Human Science Research Conference, Montreal, June Høybye MT, Olsen PR. Virtual connections engaging young cancer patients in treatment. Early pilottesting of a virtual 3D platform. Abstract presented at Teenage Cancer Trust 7 th International Conference on Teenage and Young Adult Cancer Medicine, London, June Hansen LM, Haase CN, Høybye MT, Hansen DG, Rottmann N. Samlevere til kvinder med brystkræft: Aktører på sidelinjen i den kommunale rehabilitering et grounded theory study. Poster presented at Danske Fysioterapeuters Fagfestival 2012, Odense. 6
7 11. Høybye MT. The BE Community: Bridging Social Isolation for Teenagers & Young Adults with Cancer. Poster presented at the 7th Games for Health conference, Boston, May Høybye MT, Dalton SO, Deltour I, Bidstrup PE, Frederiksen K, Johansen C. Effect of Internet support groups on psychosocial adjustment to cancer. A randomized study. Abstract presented at IPOS 11 th World Congress, Vienna, June Høybye MT. Armchair Anthropology Revisited engaging in social experience on the internet. Paper presented at the AoIR pre-conference workshop In the Game, Copenhagen, October Høybye MT, Dalton SO, Deltour I, Bidstrup PE, Frederiksen K, Johansen C. Psychosocial characteristics of participants in an internet based cancer intervention. Poster presented at IPOS 9 th World Congress, Venice, October Høybye MT, Dalton SO, Deltour I, Bidstrup PE, Frederiksen K, Johansen C. Psychosocial characteristics of participants in an internet based cancer intervention. Abstract presented at UICC World Cancer Congress, Washington DC, July Høybye MT, Johansen C. Internet based support in cancer rehabilitation processes a pilot study. Presentation at 2nd International Conference on Cancer on the Internet (ESO), New York, September Høybye MT, Johansen C. Internet based support in cancer rehabilitation processes a pilot study. Presentation at IPOS 7 th World Congress, Copenhagen, August Høybye MT. Rehabilitation in Cyberspace. Electronic support communities for breast cancer patients. Presentation at European Cancer Conference/ ECCO-12, Copenhagen, September Høybye MT. A space of our own. Electronic support communities for breast cancer patients. Presentation at 1st International Conference on Cancer on the Internet (ESO), New York, June In addition: Several research presentations in public reports (e.g. the Municipality of Copenhagen, the Danish Cancer Society, the Rehabilitation Center Dallund), at public meetings (e.g. community meetings and senior citizen community meetings), as well as research meetings (talks given to health professionals at hospitals, research units and pharma companies) and media interviews, web-blogs etc. 7