Volume 8 (2021): Issue 1 (January 2021)
Health, Media and Participation

THIS SPECIAL ISSUE, ENTITLED “HEALTH, MEDIA AND PARTICIPATION”, CONSISTS OF SEVEN ARTICLES THAT EXPLORE SOME OF THE DIFFERENT WAYS THAT MEDIA PARTICIPATION AND HEALTH PARTICIPATION INTERTWINE IN CONTEMPORARY MEDIA CULTURE. IN THESE SEVEN ARTICLES, PARTICIPATION IN HEALTH AND MEDIA IS ADDRESSED IN THE ANALYSIS OF A VARIETY OF PRACTICES: PATIENTS THAT USE MEDIA TO BECOME PARTICIPANTS IN CO-DECISION AND SELF-CARE PROCESSES, PATIENTS AND CITIZENS BEING MORE OR LESS ABLE TO USE MEDIA TO ENGAGE IN (PATIENT) COMMUNITIES, PATIENTS COMMUNICATING WITH (AND AFFECTING) INSTITUTIONS AND AUTHORITIES IN NEW MEDIATED WAYS, HEALTH PROFESSIONALS USING SOCIAL MEDIA TO CREATE PUBLIC AWARENESS ABOUT POLITICALLY URGENT ISSUES AND HEALTH PROFESSIONALS CO-DESIGNING DIGITAL LEARNING TECHNOLOGIES. ALL THE CONTRIBUTIONS ARE IN THIS WAY UNITED BY TAKING AN INTEREST IN THE DEMOCRATIC POTENTIALS AND DILEMMAS OF PARTICIPATING IN HEALTH THROUGH MEDIA PARTICIPATION. THE ISSUE ALSO INCLUDES ONE OPEN SECTION ARTICLE. THE SPECIAL ISSUE IS EDITED BY MAJA KLAUSEN, ANETTE GRØNNING AND CARSTEN STAGE.

THIS ARTICLE INVESTIGATES HOW THE PATIENT PORTAL MYCHART IS CURRENTLY EMBEDDED IN THE INFRASTRUCTURE FOR THE COLLABORATIVE CARE FOR PEOPLE IN REHABILITATION OR LIVING WITH CHRONIC DISEASE. WE AIM TO SENSITIZE DISCUSSIONS ABOUT LOGICS OF CARE (MOL, 2008), CARE INFRASTRUCTURES (DANHOLT & LANGSTRUP, 2012) AND THE PUSH FOR SELF-CARE TO THE ROLE OF INFORMATION, MEDIATED COMMUNICATION AND PARTICIPATION IN ACHIEVING GOOD CARE. WE BASE OUR ARGUMENT ON FINDINGS FROM FIELDWORK AMONG PATIENTS AND CLINICIANS AT TWO HOSPITAL UNITS FOR GASTROENTEROLOGY AND CARDIOVASCULAR DISEASES IN COPENHAGEN AROUND THE IMPLEMENTATION AND USE OF MYCHART FOR INFORMATION, COMMUNICATION AND PARTICIPATION IN SELF-CARE. OUR FIELDWORK INDICATES THAT PATIENTS HAVE CLEAR – BUT VERY DIFFERENT – PREFERENCES FOR ACCESSING AND ENGAGING WITH INFORMATION AND COMMUNICATION THROUGH MYCHART. WE LINK THESE MODES TO EXPERIENCES OF AUTHORITY, ROLE-EXPECTATIONS AND THE PROSPECT FOR JOINT DECISION-MAKING IN HEALTHCARE. WE SUGGEST THAT THE INTRODUCTION OF MORE COMMUNICATIVE FLEXIBILITY FOR SOME PATIENTS SPEAKS TO AN IMPORTANT ELEMENT IN CONTEMPORARY CARE INFRASTRUCTURES, REGARDING MEDIA CHOICE. THIS CHOICE, WHILE SEEMINGLY TRIVIAL, GRANTS THE PATIENT COMMUNICATION AGENCY AT A POINT WHERE THE PATIENT CAN ACTUALLY MASTER THE ROLE OF ACTIVE PARTNER IN CARE. WE FURTHER SUGGEST THAT ATTENDING TO OFTEN OVERLOOKED RITUAL ASPECTS OF COMMUNICATION MAY HELP QUALIFY ANALYSES OF CARE IN PURSUIT OF A GOOD LIFE.

DIGITAL TECHNOLOGIES AND PRE/PERI-NATAL APPS ARE TRANSFORMING MATERNITY CARE AS WOMEN USE COMMUNICATIONS TECHNOLOGIES TO OBTAIN INFORMATION AND SUPPORT. WOMEN FROM CULTURALLY AND LINGUISTICALLY DIVERSE (CALD) BACKGROUNDS EXPERIENCE INFORMATION AND SUPPORT GAPS, HOWEVER, RESEARCH ON NEW HEALTH COMMUNICATIONS HAS RARELY ENGAGED WITH THIS GROUP, RAISING CONCERNS ABOUT THE APPLICABILITY OF THESE TECHNOLOGIES WITH HIGHLY DIVERSE COMMUNITIES. THE GOAL OF THIS PILOT STUDY LOCATED IN IN NORTH RICHMOND, A CULTURALLY DIVERSE NEIGHBOURHOOD OF MELBOURNE, WAS TO TEST THE VALUE OF “DESIGN PROBES” IN ENGAGING WOMEN FROM CALD BACKGROUNDS IN DISCUSSIONS ABOUT HEALTH TRACKING AND WEARABLE HEALTH TECHNOLOGIES IN THE CONTEXT OF PREGNANCY AND PARENTING. THIS STUDY FOUND THAT DESIGN PROBES WERE EFFECTIVE IN ENABLING PARTICIPANTS TO PARTICIPATE IN EXTENDED DISCUSSIONS ON THE IMPLICATIONS OF DIGITAL HEALTH TECHNOLOGIES. PARTICIPANTS WERE AWARE OF THE WAYS THAT HEALTH INFORMATION SERVED THE NEEDS OF MULTIPLE ENTITIES, AND SOUGHT MORE CONTROL OVER WHERE AND WITH WHOM THEIR DATA WAS SHARED WITH.

DUE TO THEIR HIGH USER NUMBER, SOCIAL NETWORK SITES CAN BE REGARDED AS A PUBLIC SPHERE AND SHOULD BE ACCESSIBLE TO ALL DEMOCRATIC CITIZENS. NEVERTHELESS, THERE ARE SOME UNDERREPRESENTED SOCIAL GROUPS SUCH AS PEOPLE WITH MILD INTELLECTUAL DISABILITIES. THIS QUALITATIVE STUDY INVESTIGATES HOW YOUNG PEOPLE WITH MILD INTELLECTUAL DISABILITIES IN GERMANY ACCESS, INTERACT AND PARTICIPATE ON SOCIAL NETWORK SITES. THEREFORE, WE CONDUCTED 8 QUALITATIVE INTERVIEWS WITH YOUNG PEOPLE WITH MILD INTELLECTUAL DISABILITIES (AND THEIR CAREGIVERS, N=7) AND ANALYZED THE TRANSCRIBED INTERVIEWS WITH AN INDUCTIVE QUALITATIVE CONTENT ANALYSIS TECHNIQUE. OUR PARTICIPANTS DESCRIBED VARIOUS WAYS OF ACCESSING, INTERACTING AND PARTICIPATING ONLINE (E.G., SHARING THEIR OWN CONTENT). FURTHERMORE, OUR PARTICIPANTS GATHERED BOTH POSITIVE (E.G., GAINING NEW FRIENDS) AND NEGATIVE (E.G., HATE SPEECH) EXPERIENCES THERE. MOREOVER, OUR RESULTS GIVE INFORMATION ABOUT ASPECTS OF SOCIAL NETWORK SITES THAT SHOULD BE ALTERED SO THAT A POSITIVE SOCIAL CHANGE BASED ON THE INCLUSION PRINCIPLE CAN TAKE PLACE.

THIS ARTICLE INVESTIGATES THE MULTIPLE WAYS IN WHICH BODIES PRESENT THEMSELVES IN EMAIL CONSULTATIONS (ECONS) BETWEEN PATIENTS AND GENERAL PRACTITIONERS (GPs). THE DATA STEM FROM A LARGER QUALITATIVE RESEARCH PROJECT ON DIGITAL CONSULTATION IN DENMARK, FOCUSING ON THE 65+ AGE GROUP. OUR ANALYSIS DEPARTS FROM A SOCIOTECHNICAL PERSPECTIVE BY CONSIDERING THE INTRODUCTION OF THE TECHNOLOGY IN QUESTION – THE ECON BETWEEN THE PATIENT AND GP – AS CREATING NEW CHALLENGES AND OPPORTUNITIES FOR PARTICIPATION IN AND THE EXCHANGE OF COMMUNICATION WITHIN THIS RELATIONSHIP. OUR ANALYSIS LEADS TO A SIX-CATEGORY TYPOLOGY OF BODIES IN AFFECTIVE DISCOURSE IN ECONS: SENSATIONS, EMOTIONS, COUNTINGS, MEDICATION, VISUALS AND MOVEMENTS. THE ANALYSIS BRINGS TOGETHER A THEORETICAL PERSPECTIVE, THE MUTUAL SHAPINGS OF THE SOCIAL AND TECHNOLOGICAL, WITH AN AFFECTIVE PRACTICE-BASED APPROACH. THE ECON PRODUCES WHAT WE CALL AN “UNRULY DATA VITALITY”, AS THE DATA ARE ACCESSED AND RECOMBINED IN THE LARGER DIGITAL ECOSYSTEM OF THE DANISH PRIMARY CARE SECTOR.

NEW TECHNOLOGIES HAVE FACILITATED DOCTOR–PATIENT EMAIL CONSULTATIONS (E-CONSULTATIONS). GUIDELINES FOR E-CONSULTATION USE IN DENMARK STATE THAT THEY SHOULD BE USED FOR SIMPLE, CONCRETE AND NON-URGENT QUERIES; HOWEVER, A SMALL-SCALE DANISH STUDY SUGGESTED THAT DOCTORS ENCOUNTER E-CONSULTATIONS THAT DO NOT MATCH THE GUIDELINES. THE PURPOSE OF THIS ARTICLE IS TO EXPLORE WHETHER E-CONSULTATIONS IN DENMARK REFLECT RECOMMENDATIONS THAT THEY SHOULD BE SIMPLE, SHORT, CONCRETE AND WELL DEFINED, AND IF NOT, WHAT FORMS OF COMPLEXITY ARE EVIDENT. WE INDUCTIVELY ANALYSED 1,671 E-CONSULTATIONS FROM 38 PATIENTS AGED 21–91 YEARS COMMUNICATING WITH 28 DOCTORS, 6 NURSES, 1 MEDICAL STUDENT AND 8 SECRETARIES. RESULTS SHOWED BOTH QUANTITATIVE COMPLEXITY IN TERMS OF NUMBER OF INTERACTION TURNS, COMMUNICATIVE PARTICIPANTS, AND QUESTIONS ASKED, AND QUALITATIVE COMPLEXITY RELATING TO PATIENTS’ PSYCHOSOCIAL CONTEXTS AND GPS’ BIOMEDICAL DISEASE PERSPECTIVE. THUS, DESPITE EXISTING GUIDELINES AND THE LEANNESS ASSOCIATED WITH THE EMAIL MEDIUM, MULTIPLE FORMS OF COMPLEXITY WERE EVIDENT. THIS MISMATCH HIGHLIGHTS THE NEED FOR THEORETICAL DEVELOPMENT AS WELL AS THE VALUE OF RE-EXAMINING EXISTING POLICIES AND GUIDELINES REGARDING EXPECTATIONS FOR E-CONSULTATION USE.

HEALTHCARE PROFESSIONALS IN DENMARK USED THE HASHTAG #DETKUHAVÆRETMIG [“IT COULD HAVE BEEN ME”] TO EXPRESS PROFESSIONAL SOLIDARITY WITH A JUNIOR DOCTOR WHO WAS INITIALLY DECLARED NEGLIGENT AFTER ORAL INSTRUCTIONS WERE NOT WRITTEN DOWN AND FOLLOWED UP. THIS ARTICLE EXPLORES HOW THE FUNCTIONALITIES OF TWITTER FACILITATED THE EXPRESSION AND PROPAGATION OF SOLIDARITY WITH A FELLOW MEDICAL PROFESSIONAL. OUR DATA CONSIST OF ALL #DETKUHAVÆRETMIG TWEETS FROM AUGUST 2017–MAY 2019. DEVISING A MIXED METHODS APPROACH TO ANALYSE PROFESSIONAL SOLIDARITY IN TWEETS, WE EXPLORE, AMONGST OTHER THINGS, WHO THE TWEETERS WERE, WHEN THE HASHTAG WAS MOST FREQUENTLY USED, AND THE CONTENT OF TWEETED STATEMENTS. SOLIDARITY WAS EXPRESSED THROUGH THE HASHTAG ITSELF, TWEETED STATEMENTS AND PHOTOS. THE HASHTAG’S PROPAGATION POTENTIAL WAS PROMOTED BY MENTIONING POLITICIANS AND NEWS MEDIA AND INCLUDING CO-HASHTAGS THAT LINKED TO RELATED CONCERNS. TWITTER, THROUGH THE HASHTAG #DETKUHAVÆRETMIG, BECAME A VEHICLE FOR EXPRESSING AND PROPAGATING PROFESSIONAL SOLIDARITY.

THE HEALTHCARE SECTOR HAS ENTERED AN ECOLOGICAL EVOLUTION, A SYSTEMIC CHANGE CAUSED BY THE INTRODUCTION OF NEW TECHNOLOGY AND FINANCIAL CUTS, WHICH IS DEEPLY TRANSFORMING EXISTING PRACTICES IN RELATION TO SKILLS AND VALUES (NARDI & O’DAY, 1999). CONDUCTING A PARTICIPATORY DESIGN PROCESS, AIMED AT THE DEVELOPMENT OF A DIGITAL SIMULATION FOR THE EDUCATION OF OCCUPATIONAL THERAPY, WE FOUND THAT THE ONGOING DIGITALIZATION IS CHANGING EDUCATIONAL AND WORKING PRACTICES, CHALLENGING THE PROFESSIONAL IDENTITY OF THERAPISTS AND GRADUATE STUDENTS, BUT ALSO INTRODUCING NEW PROFESSIONAL OPPORTUNITIES.

WE USE A PRAGMATIC CONSTRUCTIVIST PERSPECTIVE ON LANGUAGE GAMES DEFINED AS A COLLABORATIVE CONSTRUCTION OF OUR WORLD THROUGH ACTION AND COMMUNICATION THAT FULFIL OUR PURPOSES IN HUMAN PRACTICE. OCCUPATIONAL THERAPY EMERGES AS A PROFESSION IN FLUX AS THERAPISTS MUST MOVE FROM THEIR TRADITIONAL ROLE AS HEALERS TO RETHINK THEMSELVES AS FREELANCERS OR EMPLOYED IN THE PRIVATE SECTOR. WE IDENTIFIED FOUR DIFFERENT LANGUAGE GAMES, WHICH ARTICULATE HOW THERAPISTS MUST RETHINK THEIR PROFESSIONAL IDENTITY AND PURPOSEFUL PRACTICE IN RELATION TO EMERGING WORKING CONTEXTS AND RELATIONSHIP TO THE PATIENTS.

ACADEMIC RESEARCH INVOLVING SOCIETAL PARTNERS OFTEN APPROACHES THE LATTER AS LESS KNOWLEDGEABLE, NOT POSSESSING THE SKILLS AND AUTHORITY THAT THE ACADEMIC FIELD HAS IN PRODUCING LEGITIMATE KNOWLEDGE. STILL, SEVERAL (ACADEMIC) TRADITIONS HAVE ENGAGED IN PRACTICES THAT DESTABILISE THE NOTION OF THE ACADEMIA AS THE EXCLUSIVE FIELD OF KNOWLEDGE PRODUCTION, ALBEIT NOT WITHOUT INCONSISTENCIES BETWEEN THEORY AND PRACTICE. BUILDING ON THIS TRADITION, THIS ARTICLE ADDRESSES THE NEED TO INVOLVE SOCIETAL PARTNERS IN THE START-UP PHASES OF PROJECTS THAT AIM FOR PARTICIPATORY KNOWLEDGE PRODUCTION. USING (AUTHO)ETHNOGRAPHY THIS ARTICLE REFLECTS ON THE START-UP PHASE OF A RESEARCH PROJECT ON ENVIRONMENTAL COMMUNICATION, WHICH INVOLVES A WIDE RANGE OF SOCIETAL ACTORS. IT CRITICALLY EVALUATES THE PARTICIPATORY INTENSITIES OF THE START-UP PHASE PROCESS WHICH INVOLVED A SERIES OF COLLABORATIVE DECISIONS ON HOW TO STRUCTURE PARTICIPATION, AND REPORTS ON THE OUTCOMES OF THIS PROCESS, NAMELY A SET OF GUIDING PRINCIPLES AND A TOOLKIT AIMING TO FOSTER AND ENABLE PARTICIPATION.