Adam Hayden | Indiana University Indianapolis (original) (raw)
Papers by Adam Hayden
AJN, American Journal of Nursing
ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential ca... more ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.
Philosophy in review, 2019
Philosophy in review, 2019
Biomedical researchers are trained to use positivistic approaches to develop efficacious treatmen... more Biomedical researchers are trained to use positivistic approaches to develop efficacious treatments and pursue cures for illness and disease. Accordingly, they rarely engage persons living with the disease in the development of research questions and protocols (Sacristán et al., 2016). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004), they offer value to the research process as a means to emphasize the person with the disease, rather than the disease, in isolation. We are interested in the role of patient stories as tools for influencing the biomedical research process (Greenhalgh, 2009; Panofsky, 2011). Applying Ellingson's (2009) approach to crystallization in qualitative research, we explore intersections in the literature on patient advocacy, our own narratives, and those from biomedical researchers and patients. We seek to uncover the meaning of involving not only patients, but patients' stories (Hyden, 1997), in creating an agenda for research in healthcare.
Science, 2018
A neuroscientist's battle with brain cancer prompts a personal reflection on identity and the... more A neuroscientist's battle with brain cancer prompts a personal reflection on identity and the disease process
Science, 2019
A new book offers an introduction to the ethical dimensions of germline gene editing
Cancer patients’ data, including clinical and genomic sequencing, typically reside within incompa... more Cancer patients’ data, including clinical and genomic sequencing, typically reside within incompatible electronic health records (EHR) and/or proprietary databases in clinical laboratories or companies. Multiple academic and commercial consortia have initiated “top down” approaches to encourage data sharing, though these consortia represent a small percentage of the cancer patient population and may not capture the genomic and phenotypic diversity of the larger cancer community. Critically, patients have the unique power to liberate and share their own data, since the Health Insurance Portability and Accountability Act (HIPAA) gives patients a right to access all data in a computable format. Here, we partnered with patients to examine the feasibility of leveraging the HIPAA right of access provision to access their cancer genomic data in a computable format from both academic and commercial laboratories (n = 5 patients; 3 academic labs, 5 commercial labs). We observed wide heterogen...
Journal of Medical Internet Research, 2020
Background The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a... more Background The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. Objective To understand #BTSM’s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. Methods We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. Results From 2012 to 2018, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM...
Neuro-Oncology Practice, 2020
Background Research is needed to inform palliative care models that address the full spectrum of ... more Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showe...
Neuro-Oncology, 2019
BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a... more BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for brain tumor patients. To understand #BTSM’s role as a patient support system we describe user descriptors, growth, interaction, and content sharing. METHODS We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly-available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. RESULTS From 2012 to 2018, 59764 unique users participated in #BTSM, amassing 298904 tweets. The yearly volume of #BTSM tweets increased by 264% from 2012 to 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.0%) while advocacy groups, re...
Neuro-Oncology, 2019
BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often ... more BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often suffer motor and cognitive deficits and chronic exposure to stress and anxiety, detrimental to patient quality of life (QOL). Palliative care addresses patient and care partner (caregiver) QOL needs as a complement to curative treatment, using a team-based, multidisciplinary approach. Elements of palliative care that are highest priority for patients with brain cancer are not known. METHODS A multi-stakeholder group including clinicians, researchers, patients, and care partners convened (hereafter: “stakeholders”), led jointly by a brain cancer patient and health services researcher. The stakeholders identified QOL needs for patients with brain cancer and their care partners, and mapped these needs onto a brain cancer-specific palliative care model. In 2018, patients, researchers, and clinicians participated in two moderated “tweet chats” to test and further inform QOL definitions and pa...
AJN, American Journal of Nursing
ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential ca... more ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.
Philosophy in review, 2019
Philosophy in review, 2019
Biomedical researchers are trained to use positivistic approaches to develop efficacious treatmen... more Biomedical researchers are trained to use positivistic approaches to develop efficacious treatments and pursue cures for illness and disease. Accordingly, they rarely engage persons living with the disease in the development of research questions and protocols (Sacristán et al., 2016). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004), they offer value to the research process as a means to emphasize the person with the disease, rather than the disease, in isolation. We are interested in the role of patient stories as tools for influencing the biomedical research process (Greenhalgh, 2009; Panofsky, 2011). Applying Ellingson's (2009) approach to crystallization in qualitative research, we explore intersections in the literature on patient advocacy, our own narratives, and those from biomedical researchers and patients. We seek to uncover the meaning of involving not only patients, but patients' stories (Hyden, 1997), in creating an agenda for research in healthcare.
Science, 2018
A neuroscientist's battle with brain cancer prompts a personal reflection on identity and the... more A neuroscientist's battle with brain cancer prompts a personal reflection on identity and the disease process
Science, 2019
A new book offers an introduction to the ethical dimensions of germline gene editing
Cancer patients’ data, including clinical and genomic sequencing, typically reside within incompa... more Cancer patients’ data, including clinical and genomic sequencing, typically reside within incompatible electronic health records (EHR) and/or proprietary databases in clinical laboratories or companies. Multiple academic and commercial consortia have initiated “top down” approaches to encourage data sharing, though these consortia represent a small percentage of the cancer patient population and may not capture the genomic and phenotypic diversity of the larger cancer community. Critically, patients have the unique power to liberate and share their own data, since the Health Insurance Portability and Accountability Act (HIPAA) gives patients a right to access all data in a computable format. Here, we partnered with patients to examine the feasibility of leveraging the HIPAA right of access provision to access their cancer genomic data in a computable format from both academic and commercial laboratories (n = 5 patients; 3 academic labs, 5 commercial labs). We observed wide heterogen...
Journal of Medical Internet Research, 2020
Background The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a... more Background The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. Objective To understand #BTSM’s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. Methods We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. Results From 2012 to 2018, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM...
Neuro-Oncology Practice, 2020
Background Research is needed to inform palliative care models that address the full spectrum of ... more Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showe...
Neuro-Oncology, 2019
BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a... more BACKGROUND The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for brain tumor patients. To understand #BTSM’s role as a patient support system we describe user descriptors, growth, interaction, and content sharing. METHODS We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly-available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. RESULTS From 2012 to 2018, 59764 unique users participated in #BTSM, amassing 298904 tweets. The yearly volume of #BTSM tweets increased by 264% from 2012 to 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.0%) while advocacy groups, re...
Neuro-Oncology, 2019
BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often ... more BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often suffer motor and cognitive deficits and chronic exposure to stress and anxiety, detrimental to patient quality of life (QOL). Palliative care addresses patient and care partner (caregiver) QOL needs as a complement to curative treatment, using a team-based, multidisciplinary approach. Elements of palliative care that are highest priority for patients with brain cancer are not known. METHODS A multi-stakeholder group including clinicians, researchers, patients, and care partners convened (hereafter: “stakeholders”), led jointly by a brain cancer patient and health services researcher. The stakeholders identified QOL needs for patients with brain cancer and their care partners, and mapped these needs onto a brain cancer-specific palliative care model. In 2018, patients, researchers, and clinicians participated in two moderated “tweet chats” to test and further inform QOL definitions and pa...