Scleroderma Foundation/Inspire Support Community at a Glance
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The Scleroderma Foundation/Inspire Support Community is the peer-to-peer resource for support and inspiration for people affected by the rare disease scleroderma.
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A pharmaceutical company partnered with Inspire, a social network for health, to better understand idiopathic pulmonary fibrosis (IPF) patients. Through surveys of IPF patients on Inspire, the company found that around 70% said their biggest issue was the "lack of therapies which make me feel better." When asked about clinical trial participation, 80% saw the comprehensive evaluation as a benefit, while around 20% saw the chance of a placebo as a drawback. The presentation argues that social networks provide a way for patients, particularly those with rare diseases, to be engaged, informed and have their voices heard by industry to accelerate research.
Experts by experience 2014: A compilation of patients’ stories
Experts by experience 2014: A compilation of patients’ stories: A special report by Inspire, developed in cooperation with the Stanford University School of Medicine, featuring columns written by patients as part of a monthly series in Stanford University School of Medicine’s Scope medical blog.
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Exercise and cancer: How staying active can positively impact your health and...
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Support Without Borders: The Ovarian Cancer Online Community
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Experts by Experience 2016: A compilation of patient stories
Experts by Experience 2016: A compilation of patient stories
Reaching out to real people: Tools to humanize stories
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Optimize Social Listening and Monitoring to Uncover Unmet Consumer Needs
Optimize Social Listening and Monitoring to Uncover Unmet Consumer Needs
Pulmonary Fibrosis Patient/Caregiver Experience Survey
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Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product Launch
Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product Launch
What Do Patients Really Want Out Of Adherence Technology?
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Insights into the e-Patient: An Analysis of the Inspire Annual Survey
Insights into the e-Patient: An Analysis of the Inspire Annual Survey
Experts by Experience 2015: A compilation of patients’ stories
Experts by Experience 2015: A compilation of patients’ stories
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
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Don’t Fail to Communicate – Identify Patient Perceptions of Communication Gap...
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Dr. David Greene of Arizona is at the forefront of stem cell therapy for Parkinson's Disease, focusing on innovative treatments to restore dopamine-producing neurons. His research explores the use of embryonic stem cells, induced pluripotent stem cells, and adult stem cells to replace lost neurons and potentially reverse disease progression. By transplanting differentiated cells into affected brain areas, Dr. Greene aims to address the root cause of Parkinson's. His work also investigates the neuroprotective benefits of stem cells, offering hope for effective, long-term treatments. Discover how Dr. Greene's pioneering efforts could transform Parkinson's Disease therapy.About CentiUP - Product Information Slide.pdf
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Health Tech Market Intelligence Prelim Questions -
The Ultimate Guide to Setting up Market Research in Health Tech part -1
How to effectively start market research in the health tech industry by defining objectives, crafting problem statements, selecting methods, identifying data collection sources, and setting clear timelines. This guide covers all the preliminary steps needed to lay a strong foundation for your research.
This lays foundation of scoping research project what are the
Before embarking on a research project, especially one aimed at scoping and defining parameters like the one described for health tech IT, several crucial considerations should be addressed. Here’s a comprehensive guide covering key aspects to ensure a well-structured and successful research initiative:
1. Define Research Objectives and Scope
Clear Objectives: Define specific goals such as understanding market needs, identifying new opportunities, assessing risks, or refining pricing strategies.
Scope Definition: Clearly outline the boundaries of the research in terms of geographical focus, target demographics (e.g., age, socio-economic status), and industry sectors (e.g., healthcare IT).
3. Review Existing Literature and Resources
Literature Review: Conduct a thorough review of existing research, market reports, and relevant literature to build foundational knowledge.
Gap Analysis: Identify gaps in existing knowledge or areas where further exploration is needed.
4. Select Research Methodology and Tools
Methodological Approach: Choose appropriate research methods such as surveys, interviews, focus groups, or data analytics.
Tools and Resources: Select tools like Google Forms for surveys, analytics platforms (e.g., SimilarWeb, Statista), and expert consultations.
5. Ethical Considerations and Compliance
Ethical Approval: Ensure compliance with ethical guidelines for research involving human subjects.
Data Privacy: Implement measures to protect participant confidentiality and adhere to data protection regulations (e.g., GDPR, HIPAA).
6. Budget and Resource Allocation
Resource Planning: Allocate resources including time, budget, and personnel required for each phase of the research.
Contingency Planning: Anticipate and plan for unforeseen challenges or adjustments to the research plan.
7. Develop Research Instruments
Survey Design: Create well-structured surveys using tools like Google Forms to gather quantitative data.
Interview and Focus Group Guides: Prepare detailed scripts and discussion points for qualitative data collection.
8. Sampling Strategy
Sampling Design: Define the sampling frame, size, and method (e.g., random sampling, stratified sampling) to ensure representation of target demographics.
Participant Recruitment: Plan recruitment strategies to reach and engage the intended participant groups effectively.
9. Data Collection and Analysis Plan
Data Collection: Implement methods for data gathering, ensuring consistency and validity.
Analysis Techniques: Decide on analytical approaches (e.g., statistical
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Digital Health in India_Health Informatics Trained Manpower _DrDevTaneja_15.0...
Digital India will need a big trained army of Health Informatics educated & trained manpower in India.
Presently, generalist IT manpower does most of the work in the healthcare industry in India. Academic Health Informatics education is not readily available at school & health university level or IT education institutions in India.
We look into the evolution of health informatics and its applications in the healthcare industry.
HIMMS TIGER resources are available to assist Health Informatics education.
Indian Health universities, IT Education institutions, and the healthcare industry must proactively collaborate to start health informatics courses on a big scale. An advocacy push from various stakeholders is also needed for this goal.
Health informatics has huge employment potential and provides a big business opportunity for the healthcare industry. A big pool of trained health informatics manpower can lead to product & service innovations on a global scale in India.
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Scleroderma Foundation/Inspire Support Community at a Glance
- 1. Join the Inspire Scleroderma Foundation Support Community www.scleroderma.inspire.com 15,000+ Members Over 50,000+ posts Jan. 2014 to 2015 264% Three-year community growth rate (through Jan. 2015) together we’re better SM www.Inspire.com Inspire is a company with an online community of 500,000+ patients and caregivers. Inspire partners with over 100 nonprofit patient advocacy organizations, including the Scleroderma Foundation, and a number of other rare disease advocacy organizations. Community members come from all 50 US states and from 118 Countries A World of Support At Your Fingertips www.scleroderma.org Founded in 1998, the Scleroderma Foundation helps patients and their families cope with scleroderma, promotes public awareness and education, and stimulates and support research to improve treatment of scleroderma. "This site is a wealth of information." "I always learn so much here." "I'm glad to find other people I can relate to." 28 February 2015