none 10.1332/174426419X15468575283765 Bristol University Press Bristol University Press 165 104323820 45638 2026073022161400462 10.1332 2026-07-30T22:17:02Z 2019-01-24T20:18:42Z 26 Evidence & Policy 1744-2648 1744-2656 05 2019 15 2 Tehseen Noorani Durham University, UK Magnus Karlsson Ersta Sköndal Bräcke University College, Sweden Thomasina Borkman George Mason University, USA Background This article charts the relationships between the model of evidence-based practice (EBP), healthcare markets where providers are increasingly competing through the adoption of EBP-certified interventions, and the cultivation of experiential knowledge within self-help and mutual aid groups (MAGs). After 35 years of neoliberal reform, service user involvement in research, service provision and evaluation, and patient-centered care has been operationalised in increasingly measurable ways. In seeking to value and incorporate service user experiences, current models of EBP do not unpack the heterogeneity within experiential knowledge. Aims This article explores a more meaningful use of experiential knowledge than the cursory and tokenistic treatment it is often given. Objectives Propose, illustrate and theorise the concept of ‘deep experiential knowledge’ (DEK) Identify ways that the acknowledgement of DEK are useful in healthcare policy, governance and the clinical encounter Methods Drawing upon case study vignettes, we analyse MAGs as epistemic communities of problem solvers. Findings Deep experiential knowledge is a robust and collective form of knowledge, generated over time in the long-term members (‘old-timers’) and collective knowledge of MAGs. Five characteristics of deep experiential knowledge are proposed. Discussion By rendering DEK amenable to the logic of EBP, we outline potential benefits of foregrounding DEK in the conduct of healthcare research, policy and governance, and the clinical encounter. Conclusions DEK constitutes an authority that distinguishes different degrees of experiential knowledge of healthcare problems. Attending to DEK helps untangle some of the challenges posed by EBP for and to successful service user involvement. 05 2019 217 234 10.1332/174426419X15468575283765 https://bristoluniversitypressdigital.com/view/journals/evp/15/2/article-p217.xml https://bristoluniversitypressdigital.com/view https://bristoluniversitypressdigital.com/downloadpdf/journals/evp/15/2/article-p217.xml https://www.ingentaconnect.com/content/tpp/ep/2019/00000015/00000002/art00004 https://bristoluniversitypressdigital.com/downloadpdf/journals/evp/15/2/article-p217.xml https://bristoluniversitypressdigital.com/view/journals/evp/15/2/article-p217.xml 1939 Alcoholics Anonymous AA (Alcoholics Anonymous), 1939, Alcoholics Anonymous, New York: Alcoholics Anonymous World Services, Inc 1952 Twelve steps and twelve traditions AA (Alcoholics Anonymous), 1952, Twelve steps and twelve traditions, NewYork: Alcoholics Anonymous World Services, Inc Arendt, H 1993 What is authority? In between past and future: eight exercises in political thought 91 Arendt, H, 1993 [1954], What is authority? in Arendt, H, In between past and future: eight exercises in political thought, London: Penguin Books, 91–142 Baggott, R 2005 Speaking for patients and carers - health consumer groups and the policy process Baggott, R, Allsop, J, Jones, K, 2005, Speaking for patients and carers - health consumer groups and the policy process, Basingstoke: Palgrave Macmillan Bartlett, FC 1995 Remembering: a study in social and experimental psychology Bartlett, FC, 1995, Remembering: a study in social and experimental psychology, Cambridge: Cambridge University Press Beresford, P 2002 User involvement in research and evaluation: liberation or regulation Social Policy & Society 1 2 95 Beresford, P, 2002, User involvement in research and evaluation: liberation or regulation, Social Policy & Society 1, 2, 95–105 Beresford, P 2012 User controlled research: scoping review Beresford, P, Croft, S, 2012, User controlled research: scoping review, London: National Institute for Health Research (NIHR) School for Social Care Research Borkman, TJ 1976 Experiential knowledge: a new concept for the analysis of selfhelp groups Social Service Review 50 445 Borkman, TJ, 1976, Experiential knowledge: a new concept for the analysis of selfhelp groups, Social Service Review 50, 445–56 Borkman, TJ 1990 Experiential, professional and lay frames of reference Working with selfhelp 3 Borkman, TJ, 1990, Experiential, professional and lay frames of reference, in Powell, TJ (ed), Working with selfhelp, Silver Spring, MD: National Association of Social Workers Press, 3–30 Borkman, TJ 1999 Understanding self-help/mutual aid: experiential learning in the commons Borkman, TJ, 1999, Understanding self-help/mutual aid: experiential learning in the commons, New Brunswick, NJ: Rutgers University Press Borkman, TJ 2016 Developing an experiential definition of recovery: participatory research with recovering substance abusers from multiple pathways Substance Use & Misuse 51 9 1116 Borkman, TJ, Stunz, A, Kaskutas, LA, 2016, Developing an experiential definition of recovery: participatory research with recovering substance abusers from multiple pathways, Substance Use & Misuse 51, 9, 1116–29 Borzekowski, DLG 2014 The Angelina effect: immediate reach, grasp, and impact of going public Genetics in Medicine 16 7 516 Borzekowski, DLG, Guan, Y, Smith, KC, Erby, LH, Roter, DL, 2014, The Angelina effect: immediate reach, grasp, and impact of going public, Genetics in Medicine 16, 7, 516–21 Boyce, M 2016 ‘It’s a safe space’: the role of self-harm self-help/mutual aid groups Boyce, M, 2016, ‘It’s a safe space’: the role of self-harm self-help/mutual aid groups, PhD thesis, Anglia Ruskin Univers Britten, N 2015 Patient involvement in drug licensing: a case study Social Science & Medicine 131 289 Britten, N, Denford, S, Harris-Golesworthy, F, Jibson, S, Pyart, N, Stein, K, 2015, Patient involvement in drug licensing: a case study, Social Science & Medicine 131, 289–96 Brown, P 2004 Embodied health movements: new approaches to social movements in health Sociology of Health & Illness 26 1 50 Brown, P, Zavestoski, S, McCormick, S, Mayer, B, Morello-Frosch, R, Altman, RG, 2004, Embodied health movements: new approaches to social movements in health, Sociology of Health & Illness, 26, 1, 50–80 Brown, P 2010 Health social movements: history, current work, and future directions Handbook of medical sociology 380 Brown, P, Adams, C, Morello-Frosch, SL, Simpson, R, 2010, Health social movements: history, current work, and future directions, in Bird, CE, Conrad, P, Fremont, AM, Timmermans, S (eds), Handbook of medical sociology, Nashville, TN: Vanderbilt University Press, 380–94 Cain, C 1991 Personal stories: identity acquisition and self-understanding in Alcoholics Anonymous Ethos 19 2 210 Cain, C, 1991, Personal stories: identity acquisition and self-understanding in Alcoholics Anonymous, Ethos 19, 2, 210–53 Charles, C 1997 Shared decision making in the medical encounter: what does it mean? (or it takes at least two to tango) Social Science & Medicine 44 5 681 Charles, C, Gafni, A, Whelan, T, 1997, Shared decision making in the medical encounter: what does it mean? (or it takes at least two to tango), Social Science & Medicine 44, 5, 681–92 Cope, D 1995 Functions of a breast cancer support group as perceived by the participants: an ethnographic study Cancer Nursing 18 6 472 Cope, D, 1995, Functions of a breast cancer support group as perceived by the participants: an ethnographic study, Cancer Nursing 18, 6, 472–8 Daston, L 2007 Objectivity Daston, L, Galison, P, 2007, Objectivity, London: MIT Press De Angelis, M 2017 Omnia sunt communia De Angelis, M, 2017, Omnia sunt communia, Chicago, IL: University of Chicago Press Dillon, J 2011 The personal is the political De-medicalizing misery 141 Dillon, J, 2011, The personal is the political, in Rapley, M, Moncrieff, J, Dillon, J (eds), De-medicalizing misery, London: Palgrave Macmillan, 141–57 Dudhwala, F 2017 What counts as online patient feedback, and for whom? Digital Health Humanities 3 1 Dudhwala, F, Boylan, AM, Williams, V, Powell, J, 2017, What counts as online patient feedback, and for whom? Digital Health Humanities 3, 1–3 Durand, MA 2014 Do interventions designed to support shared decision making reduce health inequalities? A systematic review and meta-analysis PloS One 9 4 e94670 Durand, MA, Carpenter, L, Dolan, H, Bravo, P, Mann, M, Bunn, F, Elwyn, G, 2014, Do interventions designed to support shared decision making reduce health inequalities? A systematic review and meta-analysis, PloS One 9, 4 e94670 Durose, C 2011 Towards co-production in research with communities Durose, C, Beebeejaun, Y, Rees, J, Richardson, J, Richardson, L, 2011, Towards co-production in research with communities, Swindon: AHRC Connected Communities Fredriksson, M 2017 Disentangling patient and public involvement in healthcare decisions: why the difference matters Sociology of Health & Illness 39 1 95 Fredriksson, M, Tritter, JQ, 2017, Disentangling patient and public involvement in healthcare decisions: why the difference matters, Sociology of Health & Illness 39, 1, 95–111 Gambrill, ED 2003 From the editor: evidence-based practice: sea change or the emperor’s new clothes? Journal of Social Work Education 39 1 3 Gambrill, ED, 2003, From the editor: evidence-based practice: sea change or the emperor’s new clothes? Journal of Social Work Education 39, 1, 3–23 Gambrill, ED 2006 Evidence-based practice and policy: choices ahead Research on Social Work Practice 16 3 338 Gambrill, ED, 2006, Evidence-based practice and policy: choices ahead, Research on Social Work Practice 16, 3, 338–57 Greenhalgh, T 2018 Time to challenge the spurious hierarchy of systematic over narrative reviews European Journal of Clinical Investigation e12931 Greenhalgh, T, Thorne, S, Malterud, K, 2018, Time to challenge the spurious hierarchy of systematic over narrative reviews, European Journal of Clinical Investigation, e12931 Haefner, S 2017 Germany Patient involvement in health technology assessment 299 Haefner, S, Danner, M, 2017, Germany, in Facey, KM, Hansen, HP, Single, ANV (eds), Patient involvement in health technology assessment, Singapore: Springer Nature, 299–312 Han, B 2015 The transparency society Han, B, 2015, The transparency society, Stanford, CA: Stanford University Press Harding, S 1986 The science question in feminism Harding, S, 1986, The science question in feminism, Ithaca, NY: Cornell University Press Humphreys, K 2004 Circles of recovery: self-help organizations for addictions Humphreys, K, 2004, Circles of recovery: self-help organizations for addictions, Cambridge: Cambridge University Press Humphreys, K 1994 Researching self-help/mutual aid groups and organizations: many roads, one journey Applied & Preventive Psychology 3 217 Humphreys, K, Rappaport, J, 1994, Researching self-help/mutual aid groups and organizations: many roads, one journey, Applied & Preventive Psychology 3, 217–31 Jensen, GH 2000 Storytelling in Alcoholics Anonymous: a rhetorical analysis Jensen, GH, 2000, Storytelling in Alcoholics Anonymous: a rhetorical analysis, Carbondale, IL: Southern Illinois University Press Jones, N 2016 Did I push myself over the edge? Complications of agency in psychosis onset and development Psychosis 8 4 324 Jones, N, Shatell, M, Kelly, T, Brown, R, Robinson, L, Renfro, R, Harris, B, Luhrmann, TM, 2016, Did I push myself over the edge? Complications of agency in psychosis onset and development, Psychosis 8, 4, 324–35 Karlsson, M 2002 Själv men inte ensam: om självhjälpsgrupper i Sverige PhD thesis Karlsson, M, 2002, Själv men inte ensam: om självhjälpsgrupper i Sverige, PhD thesis, Stockholm University Karlsson, M 2016 Brukardialogmodellen: om brukarens kunskap i den evidensbaserade praktiken Socialmedicinsk tidskrift 6 Karlsson, M, 2016, Brukardialogmodellen: om brukarens kunskap i den evidensbaserade praktiken, Socialmedicinsk tidskrift 6 Kurtz, LF 2015 Recovery groups: a guide to creating, leading, and working with groups for addictions and mental health conditions Kurtz, LF, 2015, Recovery groups: a guide to creating, leading, and working with groups for addictions and mental health conditions, Oxford: Oxford University Press Légaré, F 2014 Twelve myths about shared decision making Patient Education and Counseling 96 3 281 Légaré, F, Thompson-Leduc, P, 2014, Twelve myths about shared decision making, Patient Education and Counseling 96, 3, 281–6 Madden, MT 2017 Beware zombies and unicorns: toward critical patient and public involvement in health research in a neoliberal context Frontiers in Sociology 2 7 Madden, MT, Speed, E, 2017, Beware zombies and unicorns: toward critical patient and public involvement in health research in a neoliberal context, Frontiers in Sociology 2, 7 Matzat, J 2006–07 Self-help/mutual aid in Germany: a 30-year perspective of a participant observer International Journal of Self Help and Self Care 5 3 279 Matzat, J, 2006–07, Self-help/mutual aid in Germany: a 30-year perspective of a participant observer, International Journal of Self Help and Self Care 5, 3, 279–94 Maxwell, MA 1984 The AA experience: a close-up view for professionals Maxwell, MA, 1984, The AA experience: a close-up view for professionals, New York: McGraw-Hill Mays, N 2005 Systematically reviewing qualitative and quantitative evidence to inform management and policymaking in the health field Journal of Health Services Research and Policy 10 1 6 Mays, N, Pope, C, Popay, J, 2005, Systematically reviewing qualitative and quantitative evidence to inform management and policymaking in the health field, Journal of Health Services Research and Policy 10, 1, 6–20 McCarthy-Jones, S 2015 Auditory verbal hallucinations in schizophrenia and post-traumatic stress disorder: common phenomenology, common cause, common interventions? Hypothesis and Theory 6 McCarthy-Jones, S, Longden, E, 2015, Auditory verbal hallucinations in schizophrenia and post-traumatic stress disorder: common phenomenology, common cause, common interventions? Hypothesis and Theory 6 Meriluoto, T 2017 Turning experience into expertise: technologies of the self in Finnish participatory social policy Critical Policy Studies Meriluoto, T, 2017, Turning experience into expertise: technologies of the self in Finnish participatory social policy, Critical Policy Studies, https://doi.org/10.1080/19460171.2017.1310051 Miller, WR 1994 Models of alcoholism used in treatment: contrasting AA and other perspectives with which it is often confused Journal of Studies on Alcohol 59 2 159 Miller, WR, Kurtz, E, 1994, Models of alcoholism used in treatment: contrasting AA and other perspectives with which it is often confused, Journal of Studies on Alcohol 59, 2, 159–66 Mol, A 2002 The body multiple: ontology in medical practice Mol, A, 2002, The body multiple: ontology in medical practice, Durham, NC: Duke University Press Munn-Giddings, C 2003 Mutuality and movement: an exploration of the relationship of self-help/mutual aid to social policy Munn-Giddings, C, 2003, Mutuality and movement: an exploration of the relationship of self-help/mutual aid to social policy, PhD thesis, Loughborough University Munn-Giddings, C 2018 Reciprocity in peer-led mutual aid groups in the community: implications for social policy and social work practices Reciprocal relationships: implications for social work and social policy Munn-Giddings, C, Borkman, T, 2018, Reciprocity in peer-led mutual aid groups in the community: implications for social policy and social work practices, in Torronen, M, Munn-Giddings, C, Tarkianinen, L, Boyce, M (eds), Reciprocal relationships: implications for social work and social policy, London: Springer Noorani, T 2013 Service user involvement, authority and the ‘expert-by-experience’ in mental health Journal of Political Power 6 1 49 Noorani, T, 2013, Service user involvement, authority and the ‘expert-by-experience’ in mental health, Journal of Political Power 6, 1, 49–68 O’Halloran, S 2008 Talking oneself sober: the discourse of Alcoholics Anonymous O’Halloran, S, 2008, Talking oneself sober: the discourse of Alcoholics Anonymous, Amherst, NY: Cambria Press Oka, T 2003 Self-help groups for parents of children with intractable diseases: a qualitative study of their organizational problems Oka, T, 2003, Self-help groups for parents of children with intractable diseases: a qualitative study of their organizational problems, PhD thesis, Parkland, Florida Orulu, L 2012 Reframing dementia in Swedish self-help group conversations: constructing citizenship International Journal of Self-Help and Self-Care 6 1 9 Orulu, L, 2012, Reframing dementia in Swedish self-help group conversations: constructing citizenship, International Journal of Self-Help and Self-Care 6, 1, 9–41 Pawson, R 2013 The science of evaluation: a realist manifesto Pawson, R, 2013, The science of evaluation: a realist manifesto, London: Sage Rabeharisoa, V 2014 From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal BioSocieties 9 2 194 Rabeharisoa, V, Callon, M, Filipe, AM, Nunes, JA, Paterson, F, Vergnaud, F, 2014, From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal, BioSocieties 9, 2, 194–217 Read, J 2013 Prejudice, stigma and ‘schizophrenia’: The role of bio-genetic ideology Models of madness 157 Read, J, Haslam, N, Magliano, L, 2013, Prejudice, stigma and ‘schizophrenia’: The role of bio-genetic ideology, in Read, J, Dillon, J (eds), Models of madness, London: Routledge, 157–77 Rees, R 2012 Stakeholder perceptions and participation in reviews An introduction to systematic reviews 17 Rees, R, Oliver, S, 2012, Stakeholder perceptions and participation in reviews, in Gough, D, Oliver, S, Thomas, J (eds), An introduction to systematic reviews, London: Sage, 17–34 Riessman, F 1965 The ‘helper’ therapy principle Social Work 10 2 27 Riessman, F, 1965, The ‘helper’ therapy principle, Social Work 10, 2, 27–32 Rose, D 2009 Survivor produced research This is survivor research 38 Rose, D, 2009, Survivor produced research, in Sweeney, A, Beresford, P, Faulkner, A, Nettle, M, Rose, D (eds), This is survivor research, Ross-on-Wye: PCCS Books, 38–44 Rose, D 2018 Participatory research: real or imagined Social Psychiatry and Psychiatric Epidemiology Rose, D, 2018, Participatory research: real or imagined, Social Psychiatry and Psychiatric Epidemiology, https://doi.org/10.1007/s00127-018-1549-3 Sackett, DL 1996 Evidence-based medicine: what it is and what it isn’t British Medical Journal 312 71 Sackett, DL, Rosenberg, WM, Gray, JA, Haynes, RB, Richardson, WS, 1996, Evidence-based medicine: what it is and what it isn’t, British Medical Journal 312, 71–2 Sackett, DL 2000 Evidence-based medicine: how to practice and teach EBM Sackett, DL, Strauss, S, Richardson, W, Rosenberg, W, Haynes, R, 2000, Evidence-based medicine: how to practice and teach EBM, Edinburgh: Churchill Livingstone Schneider, J 2006 Self-management in mental health: questions for service providers and commissioners Psychiatric Bulletin 30 121 Schneider, J, 2006, Self-management in mental health: questions for service providers and commissioners, Psychiatric Bulletin 30, 121–3 Stengers, I 2012 Reclaiming animism E-Flux 36 Stengers, I, 2012, Reclaiming animism, E-Flux 36, http://www.e-flux.com/journal/36/61245/reclaiming-animism/ Suler, J 1984 The role of ideology in self-help groups Social Policy 14 3 29 Suler, J, 1984, The role of ideology in self-help groups, Social Policy 14, 3, 29–35 Walters, GD 2002 Twelve reasons why we need to find alternatives to Alcoholics Anonymous Addictive Disorders & Their Treatment 1 2 53 Walters, GD, 2002, Twelve reasons why we need to find alternatives to Alcoholics Anonymous, Addictive Disorders & Their Treatment 1, 2, 53–9 Watkins, PL 2008 Handbook of self-help therapies Watkins, PL, Clum, GA, 2008, Handbook of self-help therapies, New York: Routledge Wilson, P 2015 Research with patient and public involvement: a realist evaluation - the RAPPORT study Health Services and Delivery Research 3 38 Wilson, P, Mathie, E, Keenan, J, McNeilly, E, Goodman, C, Howe, A, Poland, F, Staniszewska, S, Kendall, S, Munday, D, Cowe, M, Peckham, S, 2015, Research with patient and public involvement: a realist evaluation - the RAPPORT study, Health Services and Delivery Research 3, 38, London: National Institute for Health Research Winegar, N 1987 Alcoholics Anonymous and the alcoholic defense structure Social Casework 68 223 Winegar, N, Stephens, TA, Varney, ED, 1987, Alcoholics Anonymous and the alcoholic defense structure, Social Casework 68, 223–8 Woods, A 2015 Experiences of hearing voices: analysis of a novel phenomenological survey Lancet Psychiatry 2 323 Woods, A, Jones, N, Alderson-Day, B, Callard, F, Fernyhough, C, 2015, Experiences of hearing voices: analysis of a novel phenomenological survey, Lancet Psychiatry 2, 323–31