Group items tagged

Scientists like their insights captured via validated instruments that organize data into quantifiable outputs that can be measured and managed. Patients want to tell stories, share anecdotes, and talk about the qualitative factors that affect their quality of life. These disparate communication preferences have made it difficult for the two groups to engage, or for scientists to translate those qualitative stories into systematic assessments that quantify the burden placed on study volunteers.

THE QUANTIFIED SELF is about making personally relevant discoveries using our own self-collected data. We call this practice everyday science, a name that emphasizes its nonprofessional character. Lately we've begun organizing small group projects that show how collaboration can make individual projects easier. Sometimes, joining forces with others who share our question can make it possible to create both personal and generalizable health knowledge. Following the scholar Effy Vayena, we use the term "participant-led research" (PLR) to describe this approach.

Background With the rise of precision medicine efforts worldwide, our study objective was to describe and map the emerging precision medicine landscape. A Google search was conducted between June 19, 2017 to July 20, 2017 to examine how "precision medicine" and its analogous terminology were used to describe precision medicine efforts. Resulting web-pages were reviewed for geographic location, data type(s), program aim(s), sample size, duration, and the key search terms used and recorded in a database. Descriptive statistics were applied to quantify terminology used to describe specific precision medicine efforts. Qualitative data were analyzed for content and patterns.

Abstract: INTRODUCTION: Spasticity in chronic spinal cord injury is a condition that can have negative repercussions on the patient's quality of life. Its treatment is complex and sometimes the outcome is insufficient. Cannabinoids have recently been used in multiple sclerosis to successfully treat spasticity that is refractory to other therapies. AIM: To quantify the clinical response of a group of patients with spastic chronic spinal cord injury to the orally administered drug delta-9-tetrahydrocannabinol-cannabidiol (Sativex®) as medication for use in special situations. PATIENTS AND METHODS: The research consists of a six-month observational study in patients with chronic spinal cord injuries with refractory spasticity. The variables collected were: modified Ashworth scale, Penn spasm frequency scale, Numeric Rating Scale, and Visual Analogue Scale for pain. Additionally, clinical variables and side effects of the treatment were also collected. RESULTS: Fifteen patients took part in this study. A significant improvement was observed on three of the scales recorded: modified Ashworth scale (z = -2.97; p = 0.003), Penn spasm frequency scale (z = -2.76; p = 0.006) and Numeric Rating Scale (z = -3.21; p = 0.001). The use of the drug was withdrawn in two patients due to side effects. CONCLUSIONS: Sativex can be considered an alternative in patients with spasticity associated with chronic spinal cord injury for whom other therapeutic measures have been insufficient. Further studies need to be conducted before the use of this drug can be recommended and so as to define a complete profile of its long-term side effects.

"So: How do you get started with a self-tracking project? You can picture your project as involving four distinct activities. Although these activities blend into each other, they do each have their own particular flavor, and by outlining them separately we think we can give you a coherent and functional recipe. The activities are: Questioning, Observing, Reasoning, and Consolidating Insight."

"HealthcareHealthcareThe ongoing "fixing healthcare" discussion at FiRe is focused on the question of how to repair a broken business model, generally seeking ways to bring providers and patients back into primary contact. This area also includes new innovations in healthcare solutions, from the Quantified Self to the new SNS field of Nutritional Microanalysis."

"The topic of placebo effects is distinguished by decades of keen scientific interest1-4 coupled with a general skepticism regarding the ultimate significance of these phenomena. The importance of psychologic factors in mediating these effects may contribute to the attitude that placebo effects are not as substantial as a therapeutic effect produced by a drug. Complementary and alternative therapies have sometimes been dismissed as "mere placebos." However, recent studies have provided compelling evidence that placebo effects are physiologically measurable with condition-specific pathways.5"

Dr. Jake Fleming recently suggested these potent keywords: quantifiable placebo The keywords led to this article. I find it affirming and empowering.

Abstract: Protocol design complexity, and associated study volunteer burden, negatively impact patient recruitment and retention as well as overall research and development productivity. Complex protocols reduce the willingness of potential clinical trial participants to enroll and reduce retention rates. There have been few systematic assessments of protocol design characteristics to determine the burden placed on study volunteers, although such an assessment would offer a compelling opportunity to optimize trial designs and improve recruitment and retention performance. To be useful, an assessment would need to be patient-centric, and focused on the factors that influence participation throughout the clinical trial. Such an assessment would also need to accommodate the unique cost-value trade-off compared with current treatment patterns that each participant makes when choosing to participate and remain in a clinical trial. This article proposes a new methodology to quantify patient burden: the clinical trial patient friction coefficient (PFC). A case example is provided to illustrate the utility of the PFC. A number of applications for the PFC are envisioned: standardizing patient burden assessment to evaluate clinical trial design feasibility, shedding light on the impact of patient burden on clinical trial economics and performance, and conducting sensitivity analyses to identify factors that most reduce patient burden and improve the performance and efficiency of clinical trials. Key words

"Get inspiration and ideas from hundreds of self-tracking projects documented in our community archive, searchable by tools and topics."

" "The Future Patient, The Future Doctor: A Healthy Relationship" Over the past year, a select group of patients has coalesced to form something groundbreaking - Project Apollo, a movement to build a robust, longitudinal picture of health and wellness for each patient. Future patients will take an active role in their own health, co-creating a team of healthcare providers and using data from family, caregivers, community, and the environment to guide them through a quantified journey of health. Sharon Anderson Morris, Sr. Director, SNS Programs, and CEO, FiReFilms Mary Beckerle, CEO, Huntsman Cancer Institute Larry Smarr, Founding Director, Calit2, (a UC San Diego / UC Irvine partnership) Moderated by Michael Kurisu, Director, Project Apollo and UCSD Center for Integrative Medicine "

"Thank you for considering buying our book, Personal Science: Learning to Observe. The book presents a step-by-step approach to exploring your personal questions with empirical methods. It contains no advice whatsoever on what treatments or medicines or diets or vitamins or exercises are worth trying. Instead, it offers meta-advice; that is, advice on how to know if the things that you try actually work the way you expect, and advice about how to develop reasonable new ideas of things to try."