{"id":{"repo_id":"edinburgh","oai_identifier":"oai:era.ed.ac.uk:1842/44395"},"canonical_url":"https://search.dev.ndltd.org/etd/edinburgh/oai:era.ed.ac.uk:1842/44395","repository":{"repo_id":"edinburgh","name":"University of Edinburgh","base_url":"https://era.ed.ac.uk/server/oai/request"},"display":{"title":"\"A compelling voice\": a qualitative study of the construction and mobilisation of lived experience evidence and expertise in health technology assessment in Scotland","abstract":"One of the inherent challenges in a resource-limited setting, such as the National Health Service (NHS), is that not every medicine or other health technology that is safe, or even efficacious, can be funded. In Scotland, such funding decisions are made using Health Technology Assessment (HTA), a multidisciplinary process that employs explicit methods to determine the value of a medicine or other health technology (such as a device or test). There are two bodies responsible for HTA in Scotland, the Scottish Medicines Consortium (SMC) and the Scottish Health Technologies Group (SHTG), both of which weigh up a range of evidence. This evidence includes clinical trials and economic data, but also the lived experience evidence of patients and carers. Despite the increasing inclusion of lived experience evidence in HTA globally, the existing literature offers a limited understanding of how patient representatives transform lived experience into HTA evidence, or how they mobilise that evidence and their expertise in the arena of HTA. Seeking to illuminate this subject I undertook twenty-four semi-structured interviews with patient representatives and key stakeholders involved in HTA, combined with 37.5 hours of observing SMC and SHTG committee meetings. Based on this empirical work, and drawing together literature from public health, sociology, political science and science and technology studies (STS), this thesis offers an interdisciplinary examination of how lived experience evidence and expertise are constructed and mobilised in HTA. The resulting chapters examine the creation of lived experience evidence, the nature and credibility of experts of experience, and power relations between patient organisations, HTA bodies and pharmaceutical companies. My findings dismantle the common framing of lived experience evidence in HTA as a homogenous entity and as something ‘out there’ to be collected and provided. Drawing on data from different kinds of patient organisations, health conditions and health technologies I offer a novel in-depth qualitative examination of the rich, complex constructive processes patient representatives undertake for HTA. This highlights both the common steps of aggregation, selection, presentation and integration that underpin the transformation of lived experience into HTA evidence, as well as the significant heterogeneity in the execution of these steps. My findings also reveal, in detail, how the resources and perceptions of patient organisations, the values and processes of HTA bodies and the assets of industry (evidentiary and financial) shape how the lived experience of individuals is (or is not) transformed into HTA evidence. In addition to these HTA-specific insights, my research also contributes to and complicates broader sociological and STS work on experiential expertise. Like Epstein (1995) and others before me, I found that patient organisation representatives possessed a hybrid epistemic identity, displaying both biomedical knowledge and knowledge of the lived experience of others. However, while previous work characterised the hybrid epistemic identity as a key credibility tactic for patient organisations, in my study the structures and processes of HTA submissions and committee meetings encouraged an epistemic segregation that made it highly difficult for patient representatives to mobilise their hybrid biomedical/experiential identity. Such processes represent an intellectual knot with practical implications because they run counter to how patient organisations commonly operate in health policy spheres. This, in turn, raises questions about how HTA processes enable or impede both epistemic justice for patient representatives, and the actualisation of democratic ambitions for patient involvement.","abstract_html":"One of the inherent challenges in a resource-limited setting, such as the National Health Service (NHS), is that not every medicine or other health technology that is safe, or even efficacious, can be funded. In Scotland, such funding decisions are made using Health Technology Assessment (HTA), a multidisciplinary process that employs explicit methods to determine the value of a medicine or other health technology (such as a device or test). There are two bodies responsible for HTA in Scotland, the Scottish Medicines Consortium (SMC) and the Scottish Health Technologies Group (SHTG), both of which weigh up a range of evidence. This evidence includes clinical trials and economic data, but also the lived experience evidence of patients and carers. Despite the increasing inclusion of lived experience evidence in HTA globally, the existing literature offers a limited understanding of how patient representatives transform lived experience into HTA evidence, or how they mobilise that evidence and their expertise in the arena of HTA. Seeking to illuminate this subject I undertook twenty-four semi-structured interviews with patient representatives and key stakeholders involved in HTA, combined with 37.5 hours of observing SMC and SHTG committee meetings. Based on this empirical work, and drawing together literature from public health, sociology, political science and science and technology studies (STS), this thesis offers an interdisciplinary examination of how lived experience evidence and expertise are constructed and mobilised in HTA. The resulting chapters examine the creation of lived experience evidence, the nature and credibility of experts of experience, and power relations between patient organisations, HTA bodies and pharmaceutical companies. My findings dismantle the common framing of lived experience evidence in HTA as a homogenous entity and as something ‘out there’ to be collected and provided. Drawing on data from different kinds of patient organisations, health conditions and health technologies I offer a novel in-depth qualitative examination of the rich, complex constructive processes patient representatives undertake for HTA. This highlights both the common steps of aggregation, selection, presentation and integration that underpin the transformation of lived experience into HTA evidence, as well as the significant heterogeneity in the execution of these steps. My findings also reveal, in detail, how the resources and perceptions of patient organisations, the values and processes of HTA bodies and the assets of industry (evidentiary and financial) shape how the lived experience of individuals is (or is not) transformed into HTA evidence. In addition to these HTA-specific insights, my research also contributes to and complicates broader sociological and STS work on experiential expertise. Like Epstein (1995) and others before me, I found that patient organisation representatives possessed a hybrid epistemic identity, displaying both biomedical knowledge and knowledge of the lived experience of others. However, while previous work characterised the hybrid epistemic identity as a key credibility tactic for patient organisations, in my study the structures and processes of HTA submissions and committee meetings encouraged an epistemic segregation that made it highly difficult for patient representatives to mobilise their hybrid biomedical/experiential identity. Such processes represent an intellectual knot with practical implications because they run counter to how patient organisations commonly operate in health policy spheres. This, in turn, raises questions about how HTA processes enable or impede both epistemic justice for patient representatives, and the actualisation of democratic ambitions for patient involvement.","abstract_has_math":false,"creators":["Carver, Catherine"],"institution":null,"degree_name":null,"degree_level":null,"degree_discipline":null,"degree_department":null,"school":null,"contributors":[],"advisors":["Cunningham-Burley, Sarah","Mazanderani, Fadhila"],"committee_chairs":[],"committee_members":[],"year":2025,"date_issued":"2025-12-12","date_published":"2025-12-12","updated_at":"2026-07-24T02:13:53Z","subjects":["Health Technology Assessment (HTA)","Lived experience evidence","Patient representatives","patient organisations","Experiential expertise","Power relations"],"languages":["en"],"rights":[],"rights_urls":[],"identifier_entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["https://doi.org/10.7488/era/6915"],"render_values":[{"text":"https://doi.org/10.7488/era/6915","href":"https://doi.org/10.7488/era/6915","code":true}]}]},"links":{"outbound_url":"https://era.ed.ac.uk/handle/1842/44395","outbound_label":"Repository record","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.advisor","label":"Advisor","values":["Cunningham-Burley, Sarah","Mazanderani, Fadhila"]},{"key":"dc:creator","label":"Author","values":["Carver, Catherine"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2026-02-11T14:54:33Z"]},{"key":"dc:date.issued","label":"Date","values":["2025-12-12"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]},{"key":"dc:type.qualificationlevel","label":"Dc Type Qualificationlevel","values":["Doctoral"]},{"key":"dc:type.qualificationname","label":"Dc Type Qualificationname","values":["PhD Doctor of Philosophy"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Health Technology Assessment (HTA)","Lived experience evidence","Patient representatives","patient organisations","Experiential expertise","Power relations"]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:language.iso","label":"Language (ISO)","values":["en"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["https://era.ed.ac.uk/handle/1842/44395","https://doi.org/10.7488/era/6915"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["One of the inherent challenges in a resource-limited setting, such as the National Health Service (NHS), is that not every medicine or other health technology that is safe, or even efficacious, can be funded. In Scotland, such funding decisions are made using Health Technology Assessment (HTA), a multidisciplinary process that employs explicit methods to determine the value of a medicine or other health technology (such as a device or test). There are two bodies responsible for HTA in Scotland, the Scottish Medicines Consortium (SMC) and the Scottish Health Technologies Group (SHTG), both of which weigh up a range of evidence. This evidence includes clinical trials and economic data, but also the lived experience evidence of patients and carers. Despite the increasing inclusion of lived experience evidence in HTA globally, the existing literature offers a limited understanding of how patient representatives transform lived experience into HTA evidence, or how they mobilise that evidence and their expertise in the arena of HTA. Seeking to illuminate this subject I undertook twenty-four semi-structured interviews with patient representatives and key stakeholders involved in HTA, combined with 37.5 hours of observing SMC and SHTG committee meetings. Based on this empirical work, and drawing together literature from public health, sociology, political science and science and technology studies (STS), this thesis offers an interdisciplinary examination of how lived experience evidence and expertise are constructed and mobilised in HTA. The resulting chapters examine the creation of lived experience evidence, the nature and credibility of experts of experience, and power relations between patient organisations, HTA bodies and pharmaceutical companies. My findings dismantle the common framing of lived experience evidence in HTA as a homogenous entity and as something ‘out there’ to be collected and provided. Drawing on data from different kinds of patient organisations, health conditions and health technologies I offer a novel in-depth qualitative examination of the rich, complex constructive processes patient representatives undertake for HTA. This highlights both the common steps of aggregation, selection, presentation and integration that underpin the transformation of lived experience into HTA evidence, as well as the significant heterogeneity in the execution of these steps. My findings also reveal, in detail, how the resources and perceptions of patient organisations, the values and processes of HTA bodies and the assets of industry (evidentiary and financial) shape how the lived experience of individuals is (or is not) transformed into HTA evidence. In addition to these HTA-specific insights, my research also contributes to and complicates broader sociological and STS work on experiential expertise. Like Epstein (1995) and others before me, I found that patient organisation representatives possessed a hybrid epistemic identity, displaying both biomedical knowledge and knowledge of the lived experience of others. However, while previous work characterised the hybrid epistemic identity as a key credibility tactic for patient organisations, in my study the structures and processes of HTA submissions and committee meetings encouraged an epistemic segregation that made it highly difficult for patient representatives to mobilise their hybrid biomedical/experiential identity. Such processes represent an intellectual knot with practical implications because they run counter to how patient organisations commonly operate in health policy spheres. This, in turn, raises questions about how HTA processes enable or impede both epistemic justice for patient representatives, and the actualisation of democratic ambitions for patient involvement."]},{"key":"dc:title","label":"Title","values":["\"A compelling voice\": a qualitative study of the construction and mobilisation of lived experience evidence and expertise in health technology assessment in Scotland"]}]}],"canonical_facts":{"dc:contributor.advisor":["Cunningham-Burley, Sarah","Mazanderani, Fadhila"],"dc:creator":["Carver, Catherine"],"dc:date.accessioned":["2026-02-11T14:54:33Z"],"dc:date.issued":["2025-12-12"],"dc:description.abstract":["One of the inherent challenges in a resource-limited setting, such as the National Health Service (NHS), is that not every medicine or other health technology that is safe, or even efficacious, can be funded. In Scotland, such funding decisions are made using Health Technology Assessment (HTA), a multidisciplinary process that employs explicit methods to determine the value of a medicine or other health technology (such as a device or test). There are two bodies responsible for HTA in Scotland, the Scottish Medicines Consortium (SMC) and the Scottish Health Technologies Group (SHTG), both of which weigh up a range of evidence. This evidence includes clinical trials and economic data, but also the lived experience evidence of patients and carers. Despite the increasing inclusion of lived experience evidence in HTA globally, the existing literature offers a limited understanding of how patient representatives transform lived experience into HTA evidence, or how they mobilise that evidence and their expertise in the arena of HTA. Seeking to illuminate this subject I undertook twenty-four semi-structured interviews with patient representatives and key stakeholders involved in HTA, combined with 37.5 hours of observing SMC and SHTG committee meetings. Based on this empirical work, and drawing together literature from public health, sociology, political science and science and technology studies (STS), this thesis offers an interdisciplinary examination of how lived experience evidence and expertise are constructed and mobilised in HTA. The resulting chapters examine the creation of lived experience evidence, the nature and credibility of experts of experience, and power relations between patient organisations, HTA bodies and pharmaceutical companies. My findings dismantle the common framing of lived experience evidence in HTA as a homogenous entity and as something ‘out there’ to be collected and provided. Drawing on data from different kinds of patient organisations, health conditions and health technologies I offer a novel in-depth qualitative examination of the rich, complex constructive processes patient representatives undertake for HTA. This highlights both the common steps of aggregation, selection, presentation and integration that underpin the transformation of lived experience into HTA evidence, as well as the significant heterogeneity in the execution of these steps. My findings also reveal, in detail, how the resources and perceptions of patient organisations, the values and processes of HTA bodies and the assets of industry (evidentiary and financial) shape how the lived experience of individuals is (or is not) transformed into HTA evidence. In addition to these HTA-specific insights, my research also contributes to and complicates broader sociological and STS work on experiential expertise. Like Epstein (1995) and others before me, I found that patient organisation representatives possessed a hybrid epistemic identity, displaying both biomedical knowledge and knowledge of the lived experience of others. However, while previous work characterised the hybrid epistemic identity as a key credibility tactic for patient organisations, in my study the structures and processes of HTA submissions and committee meetings encouraged an epistemic segregation that made it highly difficult for patient representatives to mobilise their hybrid biomedical/experiential identity. Such processes represent an intellectual knot with practical implications because they run counter to how patient organisations commonly operate in health policy spheres. This, in turn, raises questions about how HTA processes enable or impede both epistemic justice for patient representatives, and the actualisation of democratic ambitions for patient involvement."],"dc:identifier.uri":["https://era.ed.ac.uk/handle/1842/44395","https://doi.org/10.7488/era/6915"],"dc:language.iso":["en"],"dc:subject":["Health Technology Assessment (HTA)","Lived experience evidence","Patient representatives","patient organisations","Experiential expertise","Power relations"],"dc:title":["\"A compelling voice\": a qualitative study of the construction and mobilisation of lived experience evidence and expertise in health technology assessment in Scotland"],"dc:type":["Thesis"],"dc:type.qualificationlevel":["Doctoral"],"dc:type.qualificationname":["PhD Doctor of Philosophy"]},"updated_at":"2026-07-24T02:13:53Z"}