The Role of Diagnosis in Health & Wellbeing: A social science perspective on the social, economic and political costs and consequences of diagnosis

Lead Research Organisation: University of East Anglia
Department Name: Norwich Medical School

Abstract

Diagnosis is central to the practice of medicine. It is common to the experience of anyone who has ever visited their GP, seen a medical specialist in a clinic, or been admitted to hospital. Diagnosis is a social, as much as it is a medical affair. By this we mean that the practices and techniques, costs and consequences of diagnosis affect the lives and experiences of practitioners, patients and carers, and also have implications for health care institutions, policy makers, managers and others. Despite this, diagnosis as a focus of social sciences has remained something that, with a few pioneering exceptions, has rarely been directly addressed as an important topic in its own right.
The goal of this seminar series is to strengthen and support the further development of the emerging sociology of diagnosis. The seminars will provide a platform to bring together academics with appropriate expertise from a range of fields (including but not limited to medical sociology, science and technology studies, medical anthropology, organisational sociology, health policy, economics, bio-ethics and political debates on new social movements) to discuss the key issues that a critical sociology of diagnosis must address. Ultimately this sub-discipline should productively highlight the socio-economic costs and consequences of diagnostic practices and enable the improvement of health outcomes.
In order for this new field to thrive and for health outcomes related to these social processes to improve, knowledge about the sociology of diagnosis must be disseminated beyond the social sciences and the academy. The proposed seminars will bring together academic experts and representatives from health care professions, patient organizations, and policy areas for discussions informed both by sociological knowledge and the experiences and expertise of medical professionals and service users.
In order to structure these discussions and ensure the most pertinent topics are addressed, there will be five seminars in the series and each seminar will be structured around a key issue. These are:
What is diagnosis? This seminar will highlight the social, economic, psychological, ethical and political factors which shape diagnostic categories, introduce new diagnoses, and change the nature of the diagnostic process.
Diagnostic technologies. We will focus on how technologies create, reframe and highlight particular diagnoses and what drives the development of new technologies. We will explore how both lay and professional use of technology changes the understanding, and assessment of diagnosis and disease.
Diagnosis and collective health movements. This seminar will discuss how diagnoses are contested, challenged and politicised. It will explore the different ways in which diagnoses can affect different social and cultural groups in order to understand the implications for class, age, gender, ethnicity and sexuality. We will explore what a sociology of diagnosis can learn from patients and patient groups.
Practitioner and patient experiences of diagnosis. The diagnostic process is experienced by lay and professional. We will explore how diagnostic practices create or challenge territorial boundaries within and between lay and professional as well as between professions. We will consider how diagnosis is undertaken within complementary and alternative health settings.
Policy and practice. What are the primary policy domains relevant to the sociology of diagnosis? In what ways do they constrain or facilitate the emergence of different forms of diagnosis?

Planned Impact

This seminar series on the role of diagnosis in health and wellbeing will have an impact both within and beyond academia. Beneficiaries are diverse, and are involved in all stages of the production, synthesis and translation of new knowledge and understanding in the sociology of diagnosis. The ultimate impact of the series will be potential improvement of health outcomes for individuals and whole populations.
This research seminar series has the potential to benefit a wide range of academic disciplines and sub-disciplines, policy makers, healthcare professionals, users and patients. From an academic perspective, we have positive confirmation of contributors to the seminars from across many different academic disciplines including sociology and anthropology (Annemarie Jutel, Robert Aronowitz, , Ilana Lowry, Andrew Webster, Nikolas Rose), economics (Professors Miranda Mugford and Richard Smith), politics (Professor Brian Salter), psychology & psychiatry (Simon Wessely & Theresa Marteau), medical education & clinical science (Professor Amanda Howe, Professor Richard Lilford and Professor Martin Roland) and ethics & philosophy (Dr Havi Hannah Carel, Dr Anna Smajdor). Also attending will be Stuart Blume, author of the influential Black Report. Geographical representation is far-reaching, with participants are from academic institutions in the UK Europe, USA and New Zealand.
From the standpoint of practitioners we will have contributors from professional schools such as nursing and medicine (Professor Chris Hyde, Professor Nicky Britten, Professor Andrew Hattersley and Dr Nick Steel) and pharmacy (Paul Rutter) and have invited policy makers from NICE (Professor Mike Kelly) and the King's Fund (John Appleby). Furthermore, we have confirmation from a number of 3rd sector groups for their participation and support of this seminar series including Lupus UK, Patient's Association, Healthwatch UK, Norfolk LINk Health Watch.
These groups will benefit from this seminar series on the role of diagnosis in health and well-being in myriad ways. Already, the convening of this diverse group will enable a focused discussion about means for improving health outcomes. All of the participants will have a vested interest in working towards improved patient and provider experience of diagnosis. The seminars will contribute to immediate and long-term scoping and mapping of the field of diagnosis and further identification of its potential for fostering health gains. In addition to the seminars, the interactive web log, live podcasts, seminar reports, press releases and fundable research proposals will contribute to optimising the series impact. Research can become, via this collaborative, interdisciplinary group, more responsive. Ultimately, with diagnosis as a focal point, this series and its related initiatives will contribute to improvements in the health and wellbeing of individuals, communities and populations on a wide scale.
To ensure that this seminar series makes a robust impact across this wide range of interest groups and stakeholders, we will be disseminating and translating the findings of the seminars in the following ways:
Sponsoring users and early career researchers to attend the seminars via travel bursaries and in situ training and support;
Producing press releases and podcasts/videos of each seminar which will be immediately available on the 'Sociology of Diagnosis' website hosted by the University of East Anglia;
Submitting papers to relevant conferences and journals including academic, professional and health service management
Developing curriculum components to inform sociological and clinical education both at undergraduate and postgraduate level and training modules on the sociology of diagnosis for healthcare professionals.
Launching the new journal Diagnosis: Social Impact and Issues [working title].

Publications

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Annemarie Goldstein Jutel (2018) Canadian Family Physician

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Annemarie Goldstein Jutel (2019) Diagnosis Truths and Tales

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Denison HJ (2018) What influences university students to seek sexually transmitted infection testing?: A qualitative study in New Zealand. in Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives

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Denison HJ (2017) Barriers to sexually transmitted infection testing in New Zealand: a qualitative study. in Australian and New Zealand journal of public health

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Jutel A (2014) Diagnosis. in Families, Systems, & Health

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Jutel A (2015) Editor's Introduction: The Diagnosis Issue. in Perspectives in biology and medicine

 
Description This seminar series has developed and promoted the emerging sub-discipline of sociology of diagnosis. It focused on the role that diagnosis plays in individual, public, professional and political understandings of health and medicine and generated intellectual debate on diagnostic processes, practices and consequences of giving and receiving a diagnosis. Engaging with and beyond the academic community the seminars have advanced this nascent field and contributed to improving health outcomes by drawing attention to the social, cultural and economic costs and consequences of diagnostic practices.
Prepared by seven academics the series has taken place across England and afforded the opportunity for a network to coalesce and form critical mass for the establishment of an ongoing collaboration of professionals and researchers. It brought together a new research network of over 180 representatives from many academic disciplines (e.g. sociology, social anthropology, economics, ethics, health policy, social policy, philosophy, semiotics, public health); health care professionals; academic clinicians, patient organisations, and those involved in the development of health policy. This includes 50 postgraduate and early career researchers. Recordings of selected presentations can be viewed online at: http://www.youtube.com/user/Sociologyofdx. Additionally, in response to demand a 6th event for doctoral students was held to promote research capability. This was an interactive day to enhance research skills with participant presentations, feedback and expert talks chosen by participants including 'Doing a PhD on diagnosis' and 'Getting Published'.
The first four seminars were organised around four distinct domains or aspects of diagnosis - technology and innovation, theory, politics and collective health movements, and patient and practitioner experiences. These domains were pre-selected by the investigators to provide an organising structure that facilitated dialogue between different types of expertise and varying issues on diagnosis. Invited speakers spanning a range disciplines brought differing perspectives and insights to each of these events. Diagnosis was considered as both a category and process, while the consequences of conferring a diagnosis (or not) for individuals and groups were also explored. From these discussions we identified three recurrent, cross cutting themes which became the focus of the fifth seminar and actively bridges the practical and future impacts of the sociology of diagnosis. The new knowledge generated includes:
1. Diagnosis can be a highly political, emotional and contested arena with both positive and negative consequences garnering media interest. For example, diagnosis is embedded in welfare systems including work and social care;
2. Patient and practitioner expectation and experiences of diagnosis are complex and manifold taking place in multiple and often unintegrated settings. For example, complex technology does not always enhance the patient experience and can seem detached from patient understanding and experience; low tech investment in communication is often missing and patients can experience contradictory advice and information; and,
3. There is often tension and conflict between personalised and population management of diagnosis with economic as well as individual implications. For example, screening in particular can increase expectations, transform the healthy into the 'potentially ill', lead to treatment of risk factors not disease, but fail to offer choice or even care.
Exploitation Route Academic and non-academic routes for taking forward our findings include:
Via an expanding virtual community and our post-graduate network: We have a strong social media presence, having over 200 followers on the Sociology of Diagnosis Facebook page https://www.facebook.com/DiagnosisInContemporarySociety and an active group of engaged postgraduate students who attend events and contribute comment and content online. Users of these overlapping networks are incorporating insights from the sociology of diagnosis into their current and future research. This network could support a future COST bid to engage more European research.
Research publication and grant collaboration is ongoing with several Co-I submitted and/or successful with bids to ESRC, Wellcome Trust and Royal Society of New Zealand.
Further dissemination is planned with local practitioners, workforce developers and users including
1. Health Education East of England's Norfolk and Suffolk Workforce Partnership to provide a knowledge exchange event.
2. A collaboration is proposed with The Patients Association whose recent report (Feb 2015) highlights the role that diagnosis and mis-diagnosis has for patients' experience of healthcare. The proposed project would involve secondary analysis of complaints, combine findings from the Seminar Series, and lead to a professional development resource on communication and diagnosis.
Sectors Education

Healthcare

Pharmaceuticals and Medical Biotechnology

URL http://www.sociologyofdiagnosis.com
 
Description The findings of this Sociology of Diagnosis Seminar Series have been used to promote this now burgeoning social science field. Reading Groups have been set up in both the University of Exeter and the London School of Hygiene and Tropical Medicine by Professor Susan Kelly and Dr Simon Cohn, respectively. A Special Issues on Diagnosis was edited by Professor Annemarie Jutel in the interdisciplinary journal of Perspectives in Biology and Medicine. This special issue contains contributions from several prominent speakers to the Seminar Series. Many papers presented at the Seminar Series have been published. Dr Simon Cohn and Professor Annemarie Jutel are giving keynote papers at IX Medical Anthropology at Home (MAAH) Conference on 'Configurations of diagnostic processes, practices and evidence' in Tromso in Norway, June 2016. Professor Sarah Nettleton was invited to give an Open Lecture at the Medical Faculty, University of Umeå, Sweden 25th March 2015 entitled 'Towards a sociology of diagnosis: troubling categories and contingencies'. Dr Andrea Stöckl gave a paper on. 'Critique of Diagnosis: Blessing or Pitfall for Existential Therapy?' at the World Congress of Existential Therapy London 14th - 17th May 2015. Both Drs Salter and Stöckl continue to use the findings of the Seminar Series in their teaching at Norwich Medical School, University of East Anglia. Professor Susan Kelly is developing a research bid looking at diagnosis with clinical colleagues at her local Trust in Exeter. Professor Annemarie Jutel continues to teach about diagnosis with nursing and medical practitioners including her 'Best Doctors' Seminar. In addition she regularly presents her sociology of diagnosis work to practitioners and the public including: - A webinar to the board of directors of bestdoctors.com, an international second opinion diagnostic service. - A seminar to a post-graduate class of nurses, midwives and other health professionals studying an applied course on "diagnostics and therapeutics." - Contribution to a "critical diagnosis network," which is a scholarly-lay group that meets monthly with doctors, clinical psychologists and consumers in the group. - Speaking on Radio New Zealand about diagnosis. Our Facebook page continues to grow and thrive and with weekly blogs posted. For example for the week of 22 - 29th January 2016 we had nineteen page visits, a weekly total reach of 689, fifty seven people engaged and a total of 243 'Page Likes'. We have reports from PhD students who have found our seminar series fundamental in their intellectual development and the practice implications highly relevant in their dissemination. Since last updated Professor Annemarie Jutel has: become a member of the advisory group for the project "Developing Principles for Conservative Diagnosis" run by Gordon Schiff, from the Division of General Internal Medicine, Brigham and Women's Hospital, Harvard Medical School, funded by the Gordon and Betty Moore Foundation. She has also become a member of the advisory group for a project at the Thomas Jefferson University School of Medicine (Philadelphia) on uncertainty in emergency department diagnosis and, collaborated with a team of GPs from Denmark and Norway, run by Kirsti Malterud, Prof of Medicine, and GP on "embracing uncertainty in general practice." Furthermore Professor Jutel has the following articles in press: Jutel, A. "I am afraid the news is not altogether promising:" The Diagnostic moment in fiction, Perspectives in Biology and Medicine; Jutel, T. & Jutel A. "Deal with It. Name It": The Diagnostic Moment in Film, BMJ Medical Humanities; and, Jutel, A. From the bookshelf of the sociologist of diagnosis, Contemporary Sociology As a direct result of Dr Michael Morrison involvement with the ESRC Sociology of Diagnosis Seminar Series he was asked to be a reviewer for a Journal of Medical Ethics (JME) paper on overdiagnosis. As a result of his review, he was then invited to write a short commentary on the article for the JME. After the commentary he was contacted by the other invited commentators leading to further discussion of the seminar series findings. Dr Morrison was also asked to provide a summary of his commentary for the Philosopher's Index. The Sociology of Diagnosis Facebook page is now managed by postgraduate students at Exeter University where there remains a very active sociology of diagnosis reading group. For the period 2017/18 networks between the co-applicants of the Sociology of Diagnosis Seminar Series have are ongoing and productive: Professor Annemarie Jutel was an invited fellow to Exeter University in 2017 and worked with Professor Susan Kelly. Professor Jutel is an advisor to one of Exeter University's junior academics. Professors Kelly and Jutel have this month (February 2018) submitted a Sociology of Diagnosis inspired grant application titled 'Are You Sure? Diagnosis, Truth and Configurations of Power' to the Exeter-based Wellcome Trust Centre for Cultures and Environments of Health. They will also be submitting this direct to the Wellcome Trust. Professor Kelly continues to run the Sociology of Diagnosis reading group at Exeter University. All of her current work continues to be around sociology of diagnosis. Professor Jutel has published six sociology of diagnosis publications in the past year. In addition she has presented on the sociology of diagnosis in the UK, Australia and New Zealand. Presentations include: • To Be or Not to Be a Sociology Seminar: Disciplines, Diagnosis and the Human Condition, Exeter 19 Sept 2017 • Telling it like it is: Diagnostic Narratives and Power, Cultural Contexts of Health Seminar, Wellcome Collaborating Centre, Exeter, 28 Sept 2017 • Keynote: The Dying Truth, Mary Potter Hospice, Wellington, 29 April 2017 • Keynote: App-rehensive about apps, Charles Perkins Centre Ethics and integrity in research symposium, Sydney, 8 May 2017 In addition Professor Jutel is: Senior advisor to the Wellcome funded "Exploring Diagnosis: Neurodiversity and Autism" project. This is led by Ginny Russell, Exeter. 2017-on-going; An Expert Panel Member for the Agency for Healthcare Research and Quality-funded "Promoting safe care transitions: Simulation-based mastery learning to improve communication in times of diagnostic uncertainty." This is led by Kirsten Rising, Jefferson University. 2017-on-going; A member Working Group, Gordon and Betty Moore Foundation-funded project to develop Key Principles of Conservative Diagnosis. This is led by Gordon Schiff, Brigham and Women's Hospital, Boston. 2017-2018. She was also Exeter University Visiting International Scholar Fellow - Sept 2017. Dr Michael Morrison assisted in this year's Oxford University student entry to the International Genetically Engineered Machines (iGEM) competition. The group won a silver award for their project about a new diagnostic tool for Chagas disease made using synthetic biology tools. Dr Morrison assisted the group in developing the 'human practices' component of this iGEM project. This looked at the social, legal and ethical aspects of the work. Evidence of this and information about the project can be found here: http://2017.igem.org/Team:Oxford/HP/Silver
 
Description NIHR Research for Patient Benefit
Amount £236,485 (GBP)
Funding ID NIHR RfPB PB-PG-0215-36079 
Organisation NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) 
Sector Public
Country United Kingdom
Start 11/2016 
End 07/2018
 
Description "Telling it Like it Is," by Annemarie Goldstein Jutel 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Conference presentation 29 Jan, Oslo, Norway:
Year(s) Of Engagement Activity 2019
 
Description Social media engagements 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Dr Michael Morrison, co-applicant and curator of Facebook
Official Sociology of Diagnosis Facebook site https://www.facebook.com/SociologyOfDiagnosis

Curation of site, content generation, editorial assistance with guest blog pieces.
Blogs: (defined here as single posts of 1000-2000 words of original material) written by me. Dates refer to when the blog was posted on the site for the first time.

• What is the sociology of diagnosis? 09/11/2013
• The many faces of diagnosis part 1: Classification 10/03/2014
• The many faces of diagnosis part 2: Who is 'really' sick and who decides? 23/03.2014
• The many faces of diagnosis part 3: Diagnosis and technology 11/04/2014
• The many faces of diagnosis part 4: The economics of diagnosis 27/05/2014
• Some thoughts on certainty and uncertainty in diagnosis 26/09/2014
• HTS symposium on bridging the gaps between the sociologies of intervention and diagnosis part 1: The Sociology of Intervention | Susan Kelly 24/10/2014
• HTS symposium on bridging the gaps between the sociologies of intervention and diagnosis part 2: Sarah Nettleton | Towards a sociology of diagnosis 29/10/2014
• HTS symposium on bridging the gaps between the sociologies of intervention and diagnosis part 3: Celia Roberts | Articulating the transitions between diagnosis and intervention 05/11/2014
• HTS symposium on bridging the gaps between the sociologies of intervention and diagnosis part 4: Oonagh Corrigan | From bench to bedside: Diagnosis and medical uncertainty 12/11/2014
• Is dementia the new breast cancer? 'brain age' tests and the ethics of fear as a public health tool (forthcoming - est 20/11/2014)


Demand for a PhD Workshop.
Year(s) Of Engagement Activity 2013,2014,2015,2016
URL https://www.facebook.com/SociologyOfDiagnosis
 
Description • "Diagnosis and Social Pattern Analysis," presented 13-15 June, Prato, Italy: Testing for life? The sociology of diagnosis and screening 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This roundtable workshop explored the social constitution of medical testing by addressing the sociocultural, political, legal and ethical forces that have shaped the significant increase in the use of medical tests, both in routine clinical practice and in screening programs. see http://artsonline.monash.edu.au/expectations-in-healthcare-testing/events/
Year(s) Of Engagement Activity 2018
URL http://artsonline.monash.edu.au/expectations-in-healthcare-testing/events/
 
Description • https://www.facebook.com/DiagnosisInContemporarySociety Annemarie Jutel 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact This is a Facebook group
Year(s) Of Engagement Activity 2018
URL http://www.facebook.com/DiagnosisInContemporarySociety