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A study of the creation of medical knowledge

Developing guidelines using a virtual social network

Sietse Wieringa

on 18 October 2017

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Transcript of A study of the creation of medical knowledge

“As beacons at sea, guidelines go up and down in wind and weather to help keep our course in everyday practice”. (Burgers 2013)
“There is no way to establish fully secured, neat protocol statements as starting point of the sciences. There is no tabula rasa. We are like sailors who have to rebuild their ship on the open sea, without ever being able to dismantle it in dry-lock and reconstruct it from the best components” (Neurath 1983)

Developing guidelines using a virtual social network
a study in the creation of medical knowledge
Ethics & Purpose
Data from online discussions, activity and connectivity and field notes, documents and interview transcripts will be analysed using thematic analysis.

Two researchers will code the pieces of information independently and then iteratively review and discuss the themes that emerge.

Synthesis will be informed by and juxtaposed with existing theories and research traditions, especially mindlines, philosophy, knowledge managements and economics.
Analysis processes will be organised using NVivo software.

Data analysis

An existing virtual social network for healthcare professionals and patients will be selected as the virtual environment of the study.

In this environment an app will be built to modify the context of member’s interactions.

Open source software will enable the app to be customized and connected to any virtual social network.

The app will basically work with questions, answers, and ratings, but also let participants - both patients and healthcare professionals - decide which rules and contexts they want to use to create valid medical knowledge.

For instance, stimuli, anonymity and consensus can be changed. Current solutions, such as virtual Delphi software, wiki’s and online discussion forums lack the capability to model these views.

Virtual environment

The study will involve examining current workflow and the development and use of a virtual social network application in a focus group setting for the development of clinical guidelines.

A hybrid qualitative approaches will combine ethnographic, document analysis and participatory design (Sanders et al. 2010; Weng et al. 2007).

Study design

The proposed PhD study will be guided by the following research questions:

1) How can we create useful medical knowledge and link it to real-world practice

2) How (if at all and to what end) we should manage the underlying processes

Research questions

This work will build directly on Gabbay and le May’s naturalistic study of the development and sharing of complex practice-relevant knowledge in general practice.

It will add to this work by exploring how - if at all - this complex process of knowledge mediation and creation can be ‘managed’ and optimised by bringing several concepts and research traditions together such as sociology, epistemology, philosophy, communication sciences, technology, economy, medicine and everyday practice.

What this study aims to add

There is scope for developing new research designs that draw on the potential of social media, for exploring how the group process affects the knowledge-practice link.

Turoff and Hiltz, for example developed a computerised version of the Delphi method in which large numbers of participants can be accommodated and key parts of the process are automated.

Their method was subsequently adapted to maximise the potential of web 2.0 technology and produce the “real-time Delphi” in which refinement of a guideline and recommendations for its implementation could potentially occur by continuous iteration rather than in a series of specific ‘rounds’.

Participants pose questions and recommendations anonymously from their computers at home or work, using a web based platform to interact.

Using a social network

The sociocultural context of the development of knowledge and ‘facts’ in science has been studied comprehensively,

Protocol and guideline creation considered a 'black box' activity.

Ethnographical research of the problems behind clinical trial protocol writing at an American cancer research group (Gennari et al. 2004)
How authors of guidance in Dutch insurance medicine redefined the meaning of objectivity (Timmermans and Berg 2003:132)
The contests between developers about what counts as knowledge in a protocol for a British telemedicine clinic (May and Ellis 2001)


A number of research approaches use the group process to build consensus and explore diversity around a topic.

Focus Groups

Aims to explore how alternative models; ideas and criticisms could be brought together and operationalised.

Focus on alternative mediation and creation of useful knowledge.

A study of the activities of groups of healthcare professionals and patients that commend and review clinical guidelines prior to publication.

Set at NHG (Dutch equivalent NICE)


This resonates with ethnographic research by Gabbay and Le May (Gabbay and May 2004) who found that clinicians rarely used explicit evidence from research and other sources directly in practice.


Tacit knowledge,

The link between power and knowledge

The ‘intermediation’ of knowledge: the managed processes by which knowledge interaction can be promoted

Alternative Metaphors

a study of the creation of medical knowledge

Developing guidelines using a virtual social network

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Ethnographic analysis:
Data from the virtual focus groups will be collected per guideline by extracting the online activities such as clicks, ratings, questions and answers members in the focus groups. Their profiles and relations on the social network will be tracked within the virtual social network in order to analyse the connections and interaction between members. Data from the physical focus groups will be collected using non-participant observation of focus group meetings. Field notes will be written to record the main discussions, questions, answers, narratives, impressions, explanations, and alternative interpretations.
Document analysis:
The analysis will focus on publicly and non-publicly available documents produced by the guideline developing institute, committee and focus group members. The sections of texts related to the contents of the guideline will be of primary focus, but all sections that have impacts on guidance (e.g. remuneration, schedules, contracts, rules of conduct) will be included. The documents will be investigated in order to gain a broad understanding of the discourses in guideline development and to complement the ethnographic analysis.
Semi‐structured interviews:
Purposive sampling will be used to organise 20 interviews with members of the focus group, the guideline developing committee and the guideline developing institution. Their recruitment will be an on‐going process occurring throughout the study via informal contact or formal nomination of the appropriate person by the guideline-developing organisation. Interactions will involve one 45‐minute interview via Skype, telephone or in‐person. The purpose of interviews will be to understand participants’ views, including those on the app and the virtual social network, their roles and beliefs regarding adaptation to new policies and techniques affecting guideline development; the link between formal medical knowledge in everyday practice; the international, national and institutional documented guidance on the development of guidelines and Interviewees’ current and planned activities to develop guidelines and knowledge. Field notes will be written to record the main narratives, themes, impressions, explanations, and alternative interpretations within interviews.
Participatory research:
The app will be built in a participatory action research setting where builders, researchers and guideline committee experiment to tweak and improve the app continuously using evidence, reasoning and learning. Documents, field notes from meetings and informal conversation will be collected and will include plans, proposals and contracts from the guideline developing institution and IT developers. The focus here is on meta-concepts of how knowledge creation should be organised, structured and managed.

Data collection

In the study focus groups involved in three clinical guideline-developing projects at one or two guideline developing institutions will be observed as well as the research committee.

At the moment NHG in the Netherlands has agreed to facilitate the study as part of their open social network for GPs, HAWeb.nl

The focus groups will be selected based on opportunity and representativeness of the guideline.

For comparison, for each project a focus group that meets physically, an online focus group will be formed in close cooperation with the institution and will include the consideration of quality requirements, technical limitations and opportunities of discussing via a virtual social network and the time and costs involved.

Focus group sampling

It was also meant to help practitioners to avoid ‘information overload’, and “to find and apply the most useful information”(Glasziou, Mar, and Salisbury 2003).

Healthcare Science

It’s claimed that social media - interactive ways of online communication, such as virtual networks - can

“equip decision-making constituencies to improve health care delivery decrease its costs, accelerate knowledge discovery, and improve access to knowledge within developing countries”.

Virtual Social Networks

There is already a wide range of literature on the diffusion, dissemination and sustainability of knowledge (Crilly, Jashapara, and Ferlie 2010; Greenhalgh et al. 2004).

There has been (and still is) a great interest in the notion of ‘knowledge translation’ the transfer of knowledge from producer (research) to user (doctor). (Estabrooks et al. 2006; Lugtenberg et al. 2009; Straus, Ma, and Graham 2009; WHO 2005; Woolf 2008),

Beyond Knowledge Translation

Mindlines can be thought of as a combination of explicit and tacit knowledge which are shared among social groups and which reinforce norms of good practice but which are also fluid, dynamic, constantly evolving.
Instead they drew heavily on socially shared knowledge and patterns of behaviour called ‘Mindlines’
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In a review article we have argued that we should explore alternative metaphors such as
This fits a view that knowledge is not so much ‘translated’ but recreated in different contexts by different people over and over again (Mol 2002).
(Davies, Nutley, and Walter 2008; Greenhalgh and Wieringa 2011).
Current ways of generating medical knowledge and especially the role of evidence-based medicine face growing criticism.
Initially EBM aimed “to de-emphasise intuition, unsystematic clinical experience, and pathophysiologic rationale as sufficient ground for clinical decision-making”, while stressing the examination of evidence from clinical research.
Although the definition has been adjusted, critics have complained about EBM’s reductionist scope (Tonelli 1998), overemphasis on frequency-type logic and lack of focus on the individual patient(Hacking 2001), discarding mechanical reasoning (Clarke et al. 2012) and the misused of EBM in healthcare policymaking(Greenhalgh and Russell 2009).
Movements of scientists are currently emerging trying to change the way that knowledge is developed in healthcare (Chalmers et al. 2014; Dijstelbloem, Huisman, and Miedema 2013; Zuiderent-Jerak 2012)
Instead, there is a growing acknowledgment that there is a “messy engagement of multiple players with diverse sources of knowledge”
Many authors from many disciplines have rejected this linear notion because it constraints how we study and try to improve the link between knowledge and practice.
(Greenhalgh and Wieringa 2011; Oertle and Bal 2010).
Although there is growing concern regarding the implementation, computer supported cooperative working and social media are believed to have the potential to empower healthcare professionals and patients to apply knowledge by involving them in the intermediation and development of that knowledge (Archambault et al. 2013; Pratt et al. 2004).
For example, the use Wiki’s to get patients involved in guideline writing has been tested (den Breejen et al. 2012).
It’s claimed that guideline making needs reform too (Sniderman and Furberg 2009).
Most widely known is the face-to-face Delphi technique. But face-to-face meetings are costly, time-constrained, require a physically present moderator and can only include small numbers of participants.
The oral nature of discussions means that in order to capture data, the event must be tape-recorded or contemporaneously transcribed. A physically present moderator may affect discussion and/or the known status of a participant (e.g. a professor) may discourage other participants from disclosing their views.
All these issues introduce potential biases and make the face-to-face approach impractical and costly for guideline-developing institutions.
EBM: frequency type evasion
Economics: model building
mechanistic reasoning
Everyday practice: Logic of care
Intellectual property
Knowledge & growth
Industry and knowledge
Citizenship & scarcity
Who benefits?
Why choose?
e.g. Bruno Latour’s and Steve Woolgar’s work on the inner working of a laboratory involved in the discovery of thyrotropin-releasing hormone (Latour and Woolgar 1979).
Dialogism - every utterance is related to another utterance (Bakhtin)
subconsciousness processing
in a way it contrasts a movement for computer based datamining
A multilayered Truth?
(Compare Rushforth 2012)
The ethnographic approach will include the study of the current procedures and activities of usual focus groups and online activity and network relations of focus group members in the VSN.
Participatory design will be used for the development and adjustments of the virtual social network application according evolving insights during the whole of the study in close cooperation with all those involved, including the institute, users, developers and researchers.
Document analyses will include related related texts; as well as semi-structured interviews with members of the focus groups, the guideline developing committee and the guideline developing institution.
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