Adam Hayden

Indiana University-Purdue University Indianapolis | IUPUI · Department of Philosophy

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 Twi...

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 201...

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 201...

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-ba...

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 t...

A new book offers an introduction to the ethical dimensions of germline gene editing

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...

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...

A neuroscientist's battle with brain cancer prompts a personal reflection on identity and the disease process