Incorporate Patient Participation – Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product Launch
Presentation by Inspire Research Director Dave Taylor at Evidence for Value-Based Programs conference
August 12, 2015
What Do Patients Really Want Out Of Adherence Technology?Inspire
Drawing insights from the 13,000-response Inspire Annual Survey, Dave Taylor, Inspire's director of research, presented at CBI’s Patient Adherence (PAAS) conference in Philadelphia, PA, in June 2015.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
Inspire CEO Brian Loew presents "Strategies and Tactics to Leverage Social and Digital Media in Clinical Research," at the 2014 conference of the Drug Information Association (DIA) in San Diego, CA.
Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Sup...Inspire
Inspire CEO Brian Loew presented, "Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Support Community," at the June 2015 annual conference of nonprofit advocacy organization Mental Health America.
Real World Takeaway Strategies for Successful PartnershipsInspire
Conference presentation by Claire Gill, National Osteoporosis Foundation, and Brian Loew of Inspire, on topic of online patient support communities and how nonprofit patient advocacy organizations are leveraging members to help further their mission. Gill and Loew discussed how pharma companies can connect effectively with nonprofit patient advocacy organizations.
Closing perception gaps between patients and their caregiversInspire
This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."
HXR 2016: Improving Insurance Member Experiences -Janna Kimel, CambiaHxRefactored
This section of the agenda will feature leaders in innovation, customer experience, and design within the health insurance space. Each panelist will present the current state of experience at their organization, what successes they have seen, what situations they have learned from, and what their challenges and obstacles are, and where they would like to see things head in the future. Then Amy Cueva will guide the group in a discussion around strategy, measurement, culture change, and other important topics relevant to delivering phenomenal experiences.
This infographic speaks to the challenges Emergency Departments face in caring and following up with the growing population of patients they see, and demonstrates how some EDs are seeing measurable improvements in care, patient satisfaction and efficiency.
What Do Patients Really Want Out Of Adherence Technology?Inspire
Drawing insights from the 13,000-response Inspire Annual Survey, Dave Taylor, Inspire's director of research, presented at CBI’s Patient Adherence (PAAS) conference in Philadelphia, PA, in June 2015.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
Inspire CEO Brian Loew presents "Strategies and Tactics to Leverage Social and Digital Media in Clinical Research," at the 2014 conference of the Drug Information Association (DIA) in San Diego, CA.
Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Sup...Inspire
Inspire CEO Brian Loew presented, "Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Support Community," at the June 2015 annual conference of nonprofit advocacy organization Mental Health America.
Real World Takeaway Strategies for Successful PartnershipsInspire
Conference presentation by Claire Gill, National Osteoporosis Foundation, and Brian Loew of Inspire, on topic of online patient support communities and how nonprofit patient advocacy organizations are leveraging members to help further their mission. Gill and Loew discussed how pharma companies can connect effectively with nonprofit patient advocacy organizations.
Closing perception gaps between patients and their caregiversInspire
This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."
HXR 2016: Improving Insurance Member Experiences -Janna Kimel, CambiaHxRefactored
This section of the agenda will feature leaders in innovation, customer experience, and design within the health insurance space. Each panelist will present the current state of experience at their organization, what successes they have seen, what situations they have learned from, and what their challenges and obstacles are, and where they would like to see things head in the future. Then Amy Cueva will guide the group in a discussion around strategy, measurement, culture change, and other important topics relevant to delivering phenomenal experiences.
This infographic speaks to the challenges Emergency Departments face in caring and following up with the growing population of patients they see, and demonstrates how some EDs are seeing measurable improvements in care, patient satisfaction and efficiency.
Building Patient-Centeredness in the Real World: The Engaged Patient and the ...EngagingPatients
This paper examines the separate but intertwined ethical, economic and clinical concepts of patientcenteredness and how ACOs provide a structure for turning those concepts into a functioning reality.
OCHWW @ BIO: The Bio Pharma Forum on ERx and EHROgilvy Health
Advancements in electronic health records (EHRs) have reached a critical mass. They provided consumers and physicians the platforms to help patients better afford and comply with their medicationsand healthcare products, while offering pharmaceutical and healthcare companies effective ways to expand patient awareness, access, and adherence to their medications. Find out what our experts found to be the most impactful takeaways to become a savvy brand that uses EHRs to reach our targeted audiences.
Failure to Rescue is ranked #2 in healthcare claims in Canada (HIROC, 2017) Additionally, Health Standards Organization (HSO) recently updated the critical care and inpatient services standards sets to include requirements supporting the recognition and response to clinical deterioration.
Full details: https://goo.gl/cfTUrm
HXR 2016: Designing to Support Mental Health -Dr. Kimberly O'Brien, Simmons C...HxRefactored
Kimberly H. McManama O’Brien, PhD, LICSW, is an Assistant Professor at Simmons School of Social Work with a joint appointment at Harvard Medical School as an Instructor in Psychiatry. She is also a per diem clinician at Boston Children’s Hospital, where she conducts the majority of her research. Dr. O’Brien is committed to a research agenda focused on the development and testing of brief interventions for suicidal adolescents.
HXR 2016: Narratives in Healthcare: Stories as Drivers of Change - Mary Burns...HxRefactored
Narrative shapes every aspect of the healthcare experience. It molds our understanding of the past and forms our expectations for the future. Narratives are even being employed as health interventions. This track will explore how narratives have and will drive both personal and systemic change in healthcare from the perspective of the provider, patient, designer, and researcher. We will discover how harnessing narrative as a tool can transform the experience and delivery of care.
Technion lecture @T2med- Patients and ePatients are not third person wordUri Goren
"Patients" or "ePatients" Are Not a Third Person Word
Presentation by Uri Goren GM of e-Pochonderiac
The lecture is entitled after a quote from e-Patient Dave will illustrate how the changes that the healthcare industry and the health of patients will go through are linked to patients and should be for patients. The digital and mobile tools have opened up the opportunity to receive real life continues data and revolutionize medicine is being done, but how will patients use it, how they are involved and what will happen to their health.
Stories, numbers and forward looking statements will paint a picture of the here and now, and the future.
A patient perspective on the Five Year Forward View, pop up uni, 2pm, 3 septe...NHS England
Expo is the most significant annual health and social care event in the calendar, uniting more NHS and care leaders, commissioners, clinicians, voluntary sector partners, innovators and media than any other health and care event.
Expo 15 returned to Manchester and was hosted once again by NHS England. Around 5000 people a day from health and care, the voluntary sector, local government, and industry joined together at Manchester Central Convention Centre for two packed days of speakers, workshops, exhibitions and professional development.
This year, Expo was more relevant and engaging than ever before, happening within the first 100 days of the new Government, and almost 12 months after the publication of the NHS Five Year Forward View. It was also a great opportunity to check on and learn from the progress of Greater Manchester as the area prepares to take over a £6 billion devolved health and social care budget, pledging to integrate hospital, community, primary and social care and vastly improve health and well-being.
More information is available online: www.expo.nhs.uk
The Hospital Harm Project is a partnership between the Canadian Institute for Health Information (CIHI) and the Canadian Patient Safety Institute (CPSI) aimed at answering the question, "how often do patients experience harm in hospital?" Through this collaboration, decision-makers, hospital executives, clinicians and policy-makers have access to important information on patient safety in acute care hospitals and how to improve it.
Care Coordination: Provider and Patient Impact | West Corporationwestcorphealth
The National Quality Forum defines care coordination as “a function that helps ensure that the patient’s needs and preferences for health services and information sharing across people, functions, and sites are met over time.” This infographic shows the impact of poor care coordination on both providers and patients.
What do MDs think about patient engagement? What's the gap between today's healthcare marketplace and the marketplace of the future? What is pathway to patient engagement?
Join us for our 4-part webinar series with the latest real time market intelligence on patient engagement.
This presentation summarizes the results of a June 2021 survey of veterinary professionals on the effects of the COVID-19 pandemic on veterinary practices and heartworm management
2016 Connected Care and the Patient ExperienceSurescripts
Annual survey of 1,000 Americans reveals increased dissatisfaction with data availability and innovation, even though the technology exists today for a safer, more convenient and connected healthcare experience.
Raising awareness of and engagement with precision medicineKudos
Slides from my "vendor challenge" talk at the Transforming Research conference, #transformres17, Baltimore, MD, October 12-13th 2017. The challenge was to show the role Kudos might play in increasing awareness of and engagement with precision medicine.
HXR 2016: Human Focused Innovation in a Clinical Setting -Jennie Kung, UCLA H...HxRefactored
This section of the agenda will feature leaders in innovation, patient experience, and design within a clinical setting. Each panelist will present the current state of experiential innovation at their organization, what successes they have seen, what situations they have learned from, and what their challenges and obstacles are, and where they would like to see things head in the future. Then Amy Cueva will guide the group in a discussion around strategy, measurement, culture change, and other important topics relevant to delivering phenomenal experiences.
MRN is focused on building community based clinical trials. We have seen that bringing the trial to the patient reduces burden and increases recruitment rate and achieves over 95% retention rates. Learn about the benefits here.
Advancing Quality of Care for Tuberous Sclerosis Complex Patients: A Case St...Inspire
"Advancing Quality of Care for Tuberous Sclerosis Complex Patients" was a session at the iPharma conference (May 2014) in which officials from Inspire, Tuberous Sclerosis Alliance and Novartis discussed the power of patient engagement and online patient communities.
Building Patient-Centeredness in the Real World: The Engaged Patient and the ...EngagingPatients
This paper examines the separate but intertwined ethical, economic and clinical concepts of patientcenteredness and how ACOs provide a structure for turning those concepts into a functioning reality.
OCHWW @ BIO: The Bio Pharma Forum on ERx and EHROgilvy Health
Advancements in electronic health records (EHRs) have reached a critical mass. They provided consumers and physicians the platforms to help patients better afford and comply with their medicationsand healthcare products, while offering pharmaceutical and healthcare companies effective ways to expand patient awareness, access, and adherence to their medications. Find out what our experts found to be the most impactful takeaways to become a savvy brand that uses EHRs to reach our targeted audiences.
Failure to Rescue is ranked #2 in healthcare claims in Canada (HIROC, 2017) Additionally, Health Standards Organization (HSO) recently updated the critical care and inpatient services standards sets to include requirements supporting the recognition and response to clinical deterioration.
Full details: https://goo.gl/cfTUrm
HXR 2016: Designing to Support Mental Health -Dr. Kimberly O'Brien, Simmons C...HxRefactored
Kimberly H. McManama O’Brien, PhD, LICSW, is an Assistant Professor at Simmons School of Social Work with a joint appointment at Harvard Medical School as an Instructor in Psychiatry. She is also a per diem clinician at Boston Children’s Hospital, where she conducts the majority of her research. Dr. O’Brien is committed to a research agenda focused on the development and testing of brief interventions for suicidal adolescents.
HXR 2016: Narratives in Healthcare: Stories as Drivers of Change - Mary Burns...HxRefactored
Narrative shapes every aspect of the healthcare experience. It molds our understanding of the past and forms our expectations for the future. Narratives are even being employed as health interventions. This track will explore how narratives have and will drive both personal and systemic change in healthcare from the perspective of the provider, patient, designer, and researcher. We will discover how harnessing narrative as a tool can transform the experience and delivery of care.
Technion lecture @T2med- Patients and ePatients are not third person wordUri Goren
"Patients" or "ePatients" Are Not a Third Person Word
Presentation by Uri Goren GM of e-Pochonderiac
The lecture is entitled after a quote from e-Patient Dave will illustrate how the changes that the healthcare industry and the health of patients will go through are linked to patients and should be for patients. The digital and mobile tools have opened up the opportunity to receive real life continues data and revolutionize medicine is being done, but how will patients use it, how they are involved and what will happen to their health.
Stories, numbers and forward looking statements will paint a picture of the here and now, and the future.
A patient perspective on the Five Year Forward View, pop up uni, 2pm, 3 septe...NHS England
Expo is the most significant annual health and social care event in the calendar, uniting more NHS and care leaders, commissioners, clinicians, voluntary sector partners, innovators and media than any other health and care event.
Expo 15 returned to Manchester and was hosted once again by NHS England. Around 5000 people a day from health and care, the voluntary sector, local government, and industry joined together at Manchester Central Convention Centre for two packed days of speakers, workshops, exhibitions and professional development.
This year, Expo was more relevant and engaging than ever before, happening within the first 100 days of the new Government, and almost 12 months after the publication of the NHS Five Year Forward View. It was also a great opportunity to check on and learn from the progress of Greater Manchester as the area prepares to take over a £6 billion devolved health and social care budget, pledging to integrate hospital, community, primary and social care and vastly improve health and well-being.
More information is available online: www.expo.nhs.uk
The Hospital Harm Project is a partnership between the Canadian Institute for Health Information (CIHI) and the Canadian Patient Safety Institute (CPSI) aimed at answering the question, "how often do patients experience harm in hospital?" Through this collaboration, decision-makers, hospital executives, clinicians and policy-makers have access to important information on patient safety in acute care hospitals and how to improve it.
Care Coordination: Provider and Patient Impact | West Corporationwestcorphealth
The National Quality Forum defines care coordination as “a function that helps ensure that the patient’s needs and preferences for health services and information sharing across people, functions, and sites are met over time.” This infographic shows the impact of poor care coordination on both providers and patients.
What do MDs think about patient engagement? What's the gap between today's healthcare marketplace and the marketplace of the future? What is pathway to patient engagement?
Join us for our 4-part webinar series with the latest real time market intelligence on patient engagement.
This presentation summarizes the results of a June 2021 survey of veterinary professionals on the effects of the COVID-19 pandemic on veterinary practices and heartworm management
2016 Connected Care and the Patient ExperienceSurescripts
Annual survey of 1,000 Americans reveals increased dissatisfaction with data availability and innovation, even though the technology exists today for a safer, more convenient and connected healthcare experience.
Raising awareness of and engagement with precision medicineKudos
Slides from my "vendor challenge" talk at the Transforming Research conference, #transformres17, Baltimore, MD, October 12-13th 2017. The challenge was to show the role Kudos might play in increasing awareness of and engagement with precision medicine.
HXR 2016: Human Focused Innovation in a Clinical Setting -Jennie Kung, UCLA H...HxRefactored
This section of the agenda will feature leaders in innovation, patient experience, and design within a clinical setting. Each panelist will present the current state of experiential innovation at their organization, what successes they have seen, what situations they have learned from, and what their challenges and obstacles are, and where they would like to see things head in the future. Then Amy Cueva will guide the group in a discussion around strategy, measurement, culture change, and other important topics relevant to delivering phenomenal experiences.
MRN is focused on building community based clinical trials. We have seen that bringing the trial to the patient reduces burden and increases recruitment rate and achieves over 95% retention rates. Learn about the benefits here.
Advancing Quality of Care for Tuberous Sclerosis Complex Patients: A Case St...Inspire
"Advancing Quality of Care for Tuberous Sclerosis Complex Patients" was a session at the iPharma conference (May 2014) in which officials from Inspire, Tuberous Sclerosis Alliance and Novartis discussed the power of patient engagement and online patient communities.
Beyond The Business Case For Diversity and Inclusion In TechWayne Sutton
Black History Month 2016 Talk
Tech companies released their diversity and inclusion data in 2014 that lead to the national awareness of the lack of inclusion in the workforce that has stifled innovation. Research after research continues to show that businesses with diverse leadership and employees outperform companies that are homogeneous yet many executives question the value of diversity. The conversation to-date still reflects how little progress has been made and what solutions are needed to create change and impact. Therefore, we must shift our strategies towards a more human-focused mindset to create empathic results for inclusion. This talk will explore strategies needed to go beyond the business case for diversity and inclusion in tech.
This is a deck I created to frame out my vision about healthcare and used in my job search. This is the exciting space in healthcare right now - communications, segmentation, data mining.
Tom Krohn, Business Lead for the Lilly Clinical Open Innovation Team, gave this presentation at the Patients at the Center of Clinical Research Workshop on Nov. 14, 2013.
In it, he discusses ways in which patients can become collaborators in drug development
Communicating the Case for Diversity and Inclusion Aerial Ellis
Addressing Imperatives: The growing requirement to address how workforce diversity has a quantifiable effect on business/performance outcomes, creates financial/economic benefits, and shifts organizational culture to impact greater human contribution; Assessing Implementation: The proactive effort that responds to the changing demographic profile of the workforce through the implementation of programs and services that support and empower a diverse workforce through multicultural approaches (ie. programs, initiatives, execution); Achieving Success: The return on investment (ROI) in terms of performance and economic outcomes that results from leveraging the variant knowledge, skills, abilities, talents, intellectual capital, perspectives, working styles, etc. of a diverse workforce (process-oriented).
This webinar will tell you what you need to know about clinical trials, their history, and help you prepare for a trial. If you’re currently considering participating in a clinical trial, we hope that this webinar helps to answer many of your questions.
In the presentation you'll learn the difference between different types of clinical trial and the design and purpose of clinical trials, and you'll get an inside look at the approval process.
The webinar was hosted by Dawn Richards, Director of Patient and Public Engagement at Clinical Trials Ontario and featured a panel of patients, James Davidson, Eric Pitters and Kathie LaForge.
If you're a researcher interested in Cancer Council NSW grant funding, this presentation will guide you through the application process, as well as how and why we ask you to get consumers involved.
Resident Performance from the Patient's View: Richard Wardrop, MD, PhD, FAAPPicker Institute, Inc.
Principal investigator: Richard M. Wardrop III, MD, PhD, FAAP, FACP, WakeMed Faculty Physicians, Internal Medicine and Pediatrics, Assistant Professor at Virginia Tech Cailion School of Medicine and the University of North Carolina School of Medicine
The Resident Performance project intended to adapt an existing attendant-based evaluation into a patient-centered prototype tool that is concise, valid and reliable, and that enables patients to accurately assess resident performance on 4/6 ACGME competencies. Performance with regard to ACGME core competencies of residents who receive feedback and coaching using the patient-centered tool was compared to that of those who received attending-only feedback.
Please share this slideshow with anyone who may be interested!
Watch all our webinars: https://www.youtube.com/playlist?list=PL4dDQscmFYu_ezxuxnAE61hx4JlqAKXpR
In this webinar:
● Discussion of the CADTH Symposium
● Recommendations for HTA improvements in Canada
● Audience Q&A
View the video: https://youtu.be/AJCOemf2r6Y
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A presentation delivered by IPPOSI CEO, Derick Mitchell at the University College Dublin PharmTox Society event on Clinical Trials in Ireland on March 6th, 2017
evidence based practice is best for the people working with patients
ebp should be used by the heath care provider.
ebp based upon clinical experties
best research evidence
patient preference and values
A joint presentation on Real People, Real Data at the 2016 International Forum on Quality and Safety in Healthcare in Gothenburg, Sweden. Presented by Leanne Wells of the Consumers Health Forum of Australia; Sam Vaillancourt of St. Michael’s Hospital, Toronto, Canada, and; Dr Paresh Dawda of the Australian National University.
Exercise and cancer: How staying active can positively impact your health and...Inspire
In an hour-long webinar, nationally recognized exercise specialist Carol Michaels, MBA, ACE, ACSM discussed how maintaining an exercise program during cancer treatment and recovery can help patients to minimize treatment side effects, increase energy levels, and reduce stress, along with many other benefits. Inspire produced the educational webinar in partnership with the Bladder Cancer Advocacy Network, US TOO International, and ThyCa: Thyroid Cancer Survivors' Association.
Patient-centric social media for outcomes and pharmacovigilance consideration...Inspire
Through the use of de-identified Big Data from online patient forums open to healthcare providers, the pharmaceutical industry may glean useful insights into both the safety of existing products as well as future needs of patients. Post-marketing safety surveillance for pharmaceuticals currently relies on data from adverse event reports to companies or regulatory authorities, medical literature, and observational databases. Together these sources provide some insight into everyday product safety or risk, but the unique insight the patients themselves can offer is also highly desirable.
Using insights from a 2016 research project involving Inspire, GlaxoSmithKline (GSK) Pharmaceuticals, and Epidemico, an innovative informatics company, we are exploring the use of social listening data for pharmacovigilance and other R&D concerns. A core question is, “What valuable insights can we glean from social listening to help improve patients’ lives—whether through improved safety, more relevant clinical trials, or research and development of new treatment options?”
Successfully Navigating the Parent Landmines in the NICU Inspire
Deb Discenza of PreemieWorld and the Inspire Preemie Support Community, presents at the 9th Council of International Neonatal Nurses Conference (COINN), in August 2016.
Support Without Borders: The Ovarian Cancer Online CommunityInspire
Inspire CEO Brian Loew presents online research data to the national conference of the Ovarian Cancer Research Fund Alliance (OCRFA), an Inspire partner. The conference session took place July 10, 2016, in Washington, DC.
Experts by Experience 2016: A compilation of patient storiesInspire
In cooperation with Stanford Medicine, Inspire presents the special report, "Experts by Experience 2016: A compilation of patient stories," the fourth in an ongoing series.
Optimize Social Listening and Monitoring to Uncover Unmet Consumer NeedsInspire
Dave Taylor, director of research at Inspire, discusses ways that pharmaceutical and biotech companies can appropriately and effectively leverage social listening and monitoring. Taylor presented at the CBI BioPharma Social Media and Digital Platforms conference in February 2016 in Philadelphia, PA.
The "Pulmonary Fibrosis Patient/Caregiver Experience Survey" explored the experiences of people affected by pulmonary fibrosis. Inspire conducted the survey in cooperation with its partner, the Pulmonary Fibrosis Foundation (PFF). Inspire CEO Brian Loew presented the findings during the PFF Summit in Nov. 2015 in Washington, DC.
Insights into the e-Patient: An Analysis of the Inspire Annual SurveyInspire
"Insights into the e-Patient: An Analysis of the Inspire Annual Survey" was a presentation that Inspire's Dave Taylor made in May 2015 to the iPharma conference
Experts by Experience 2015: A compilation of patients’ storiesInspire
In cooperation with Stanford Medicine, Inspire presents "Experts by Experience 2015: A compilation of patients’ stories." The special report is the third in an ongoing series.
TalkPsoriasis is the largest online support community of people impacted by psoriasis or psoriatic arthritis. Sponsored by the National Psoriasis Foundation and Inspire, TalkPsoriasis is an open and encouraging environment where people affected by psoriasis or psoriatic arthritis can connect, exchange information, and meet friends.
Voice of the Empowered Patient: An Analysis of the Inspire Annual SurveyInspire
Inspire teamed with the trade organization Biotechnology Industry Organization for the seminar, “Connecting With the Empowered Patient in the Digital Age,” held Feb. 2015 at BIO headquarters in Washington, DC. The event brought together leaders from the patient advocacy community and life sciences industry to discuss how social media can be utilized to empower patients and engage advocates.
Inspire's Research Director Dave Taylor led the session, "Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey."
Scleroderma Foundation/Inspire Support Community at a Glance Inspire
The Scleroderma Foundation/Inspire Support Community is the peer-to-peer resource for support and inspiration for people affected by the rare disease scleroderma.
Experts by experience 2014: A compilation of patients’ storiesInspire
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.
Inspire Rare Disease Health Communities at a GlanceInspire
People affected by rare diseases come to Inspire's health communities for peer-to-peer information and support. The number of discussions and the types and depths of connections are what make the communities invaluable to tens of thousands of patients and caregivers worldwide.
Neurofibromatosis Social Media Trends -- a Medicine 2.0 Presentation Inspire
Inspire CEO Brian Loew discusses findings from Neurofibromatosis Social Media Trends, a survey report from the Inspire/Neurofibromatosis Network Support Community.
Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
Global launch of the Healthy Ageing and Prevention Index 2nd wave – alongside...ILC- UK
The Healthy Ageing and Prevention Index is an online tool created by ILC that ranks countries on six metrics including, life span, health span, work span, income, environmental performance, and happiness. The Index helps us understand how well countries have adapted to longevity and inform decision makers on what must be done to maximise the economic benefits that comes with living well for longer.
Alongside the 77th World Health Assembly in Geneva on 28 May 2024, we launched the second version of our Index, allowing us to track progress and give new insights into what needs to be done to keep populations healthier for longer.
The speakers included:
Professor Orazio Schillaci, Minister of Health, Italy
Dr Hans Groth, Chairman of the Board, World Demographic & Ageing Forum
Professor Ilona Kickbusch, Founder and Chair, Global Health Centre, Geneva Graduate Institute and co-chair, World Health Summit Council
Dr Natasha Azzopardi Muscat, Director, Country Health Policies and Systems Division, World Health Organisation EURO
Dr Marta Lomazzi, Executive Manager, World Federation of Public Health Associations
Dr Shyam Bishen, Head, Centre for Health and Healthcare and Member of the Executive Committee, World Economic Forum
Dr Karin Tegmark Wisell, Director General, Public Health Agency of Sweden
Deep Leg Vein Thrombosis (DVT): Meaning, Causes, Symptoms, Treatment, and Mor...The Lifesciences Magazine
Deep Leg Vein Thrombosis occurs when a blood clot forms in one or more of the deep veins in the legs. These clots can impede blood flow, leading to severe complications.
CHAPTER 1 SEMESTER V PREVENTIVE-PEDIATRICS.pdfSachin Sharma
This content provides an overview of preventive pediatrics. It defines preventive pediatrics as preventing disease and promoting children's physical, mental, and social well-being to achieve positive health. It discusses antenatal, postnatal, and social preventive pediatrics. It also covers various child health programs like immunization, breastfeeding, ICDS, and the roles of organizations like WHO, UNICEF, and nurses in preventive pediatrics.
How many patients does case series should have In comparison to case reports.pdfpubrica101
Pubrica’s team of researchers and writers create scientific and medical research articles, which may be important resources for authors and practitioners. Pubrica medical writers assist you in creating and revising the introduction by alerting the reader to gaps in the chosen study subject. Our professionals understand the order in which the hypothesis topic is followed by the broad subject, the issue, and the backdrop.
https://pubrica.com/academy/case-study-or-series/how-many-patients-does-case-series-should-have-in-comparison-to-case-reports/
India Clinical Trials Market: Industry Size and Growth Trends [2030] Analyzed...Kumar Satyam
According to TechSci Research report, "India Clinical Trials Market- By Region, Competition, Forecast & Opportunities, 2030F," the India Clinical Trials Market was valued at USD 2.05 billion in 2024 and is projected to grow at a compound annual growth rate (CAGR) of 8.64% through 2030. The market is driven by a variety of factors, making India an attractive destination for pharmaceutical companies and researchers. India's vast and diverse patient population, cost-effective operational environment, and a large pool of skilled medical professionals contribute significantly to the market's growth. Additionally, increasing government support in streamlining regulations and the growing prevalence of lifestyle diseases further propel the clinical trials market.
Growing Prevalence of Lifestyle Diseases
The rising incidence of lifestyle diseases such as diabetes, cardiovascular diseases, and cancer is a major trend driving the clinical trials market in India. These conditions necessitate the development and testing of new treatment methods, creating a robust demand for clinical trials. The increasing burden of these diseases highlights the need for innovative therapies and underscores the importance of India as a key player in global clinical research.
The dimensions of healthcare quality refer to various attributes or aspects that define the standard of healthcare services. These dimensions are used to evaluate, measure, and improve the quality of care provided to patients. A comprehensive understanding of these dimensions ensures that healthcare systems can address various aspects of patient care effectively and holistically. Dimensions of Healthcare Quality and Performance of care include the following; Appropriateness, Availability, Competence, Continuity, Effectiveness, Efficiency, Efficacy, Prevention, Respect and Care, Safety as well as Timeliness.
Leading the Way in Nephrology: Dr. David Greene's Work with Stem Cells for Ki...Dr. David Greene Arizona
As we watch Dr. Greene's continued efforts and research in Arizona, it's clear that stem cell therapy holds a promising key to unlocking new doors in the treatment of kidney disease. With each study and trial, we step closer to a world where kidney disease is no longer a life sentence but a treatable condition, thanks to pioneers like Dr. David Greene.
CRISPR-Cas9, a revolutionary gene-editing tool, holds immense potential to reshape medicine, agriculture, and our understanding of life. But like any powerful tool, it comes with ethical considerations.
Unveiling CRISPR: This naturally occurring bacterial defense system (crRNA & Cas9 protein) fights viruses. Scientists repurposed it for precise gene editing (correction, deletion, insertion) by targeting specific DNA sequences.
The Promise: CRISPR offers exciting possibilities:
Gene Therapy: Correcting genetic diseases like cystic fibrosis.
Agriculture: Engineering crops resistant to pests and harsh environments.
Research: Studying gene function to unlock new knowledge.
The Peril: Ethical concerns demand attention:
Off-target Effects: Unintended DNA edits can have unforeseen consequences.
Eugenics: Misusing CRISPR for designer babies raises social and ethical questions.
Equity: High costs could limit access to this potentially life-saving technology.
The Path Forward: Responsible development is crucial:
International Collaboration: Clear guidelines are needed for research and human trials.
Public Education: Open discussions ensure informed decisions about CRISPR.
Prioritize Safety and Ethics: Safety and ethical principles must be paramount.
CRISPR offers a powerful tool for a better future, but responsible development and addressing ethical concerns are essential. By prioritizing safety, fostering open dialogue, and ensuring equitable access, we can harness CRISPR's power for the benefit of all. (2998 characters)
4. 4
Inspire Background
Social network for
PTs and CGs:
• ~648,000 members
• 200+ communities
• ~110 advocacy org.
partners
‘Born’ in 2005
Live in 2006
Member growth
through:
• Organic search
• Advocacy groups
• Miscellaneous
Goal was to connect
patients & caregivers
with one another
AND connect them
directly with pharma
(clinical trials)
5. 5
Panelist Introductions
Linnea Duff
Advanced Lung Cancer
Survivor
Advocate & Blogger
twitter.com/1111linno
outlivinglungcancer.com
Kari Luther Rosbeck
President and CEO
Tuberous Sclerosis
Alliance
>2,800 members in TS
Alliance Support
Community
Melanie Vogel
Mother and ‘caregiver’ to
daughter, Riley with TSC
Riley has participated in
clinical trials since Dx at
17 months old
Founder of Rock 4 Riley
(rock4riley.org)
7. 7
Clinical Trial Design Considerations
A while back, we were asked by a pharma partner to assess patient
willingness to participate in one of two clinical trial designs for IBD,
each of which had unique testing requirements
- Trial Design #1:
6-month trial in which
patient would have to
collect anywhere from 2
to 6+ stool samples
during that time
- Trial Design #2:
6-month trial in which
patient would have to
have 2 endoscopies
performed (one at the
start and one at the end
of the trial)
37%
54%
Overall, those who were
‘sicker’ (not in remission at
time of study, have had
more flares in past year)
were:
1) More willing to
participate, and
2) More willing to ‘do
more’ for the study
VALUE
8. 8
Case Study: One More Lung Biopsy
In some recent work we’ve done in
NSCLC, our pharma partner wanted to
know if patients would be willing to
undergo another lung biopsy if a new
genetic/biomarker test became available
that could inform additional treatment
options
Despite several having complications
with their previous biopsies (e.g.,
collapsed lung, infection, etc.), most
would consider the test
VALUE
At the Patient Adherence and Access
Summit in June, we took a close look at
the word “adherence”
“Adherence” and “compliance” represent
authoritative concepts, subliminally
elevating the HCP over their patients
We recognized the need for more
patient-centric concepts such as
“ownership” and “engagement”
In this session, we need to evaluate the
word “value” which has been used in the
context of pharma and providers
Deliver patients and their loved ones
their ‘WIIFM’ à “hope”, “outcomes”
“quality of life”
10. 10
Overcoming Obstacles Before & During
Clinical Trials
“If you show up regularly,
you adhere”
ASCO paying HCPs $350/
patient for those who stay
compliant with protocol
Food for thought:
- Setting expectations going into a
clinical trial
- What keeps patients coming back
for the trial
- What issues might a patient have
with:
- Trial center accessibility
- Finances (travel costs, etc.)
- Check-ins and evaluations
- Overall satisfaction
- Treatment satisfaction
- Quality of life
- What improvements can be made
to make clinical trial participation
more manageable
11. 11
True Patient-Centric Design: Early and Often
Food for thought:
- How can patients aid with the development of patient-reported
outcome tools and measurements?
- What should be the role patients play in helping to develop these
surveys/questionnaires?
In one of yesterday’s sessions, there was a graphic which showed
“Patient-centered endpoints” listed under Phase III of the new product
development cycle
- When should patients be involved in this process?