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.
Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product LaunchInspire
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
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.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
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.
Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Sup...Inspire
This document summarizes Inspire, a social network that connects patients and caregivers with pharmaceutical companies. It has over 11 million annual visits and 615,000 members across 208 health communities. The Mental Health America/Inspire Support Community launched in 2010 and has over 4,700 members discussing topics like bipolar disorder, depression, and schizophrenia. Inspire aims to provide an authentic, engaged, and trusted online space while empowering patients and promoting partners' resources. It is redesigning its platform to be mobile-first and better meet members' needs.
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.
Physician-patient interaction and the Internet: The Canadian ExperiencePat Rich
Physician-patient interactions are changing as both groups use the internet for health information. A survey found that most physicians search online for information and know patients do as well. While some physicians feel this has improved interactions by empowering informed patients, others worry about patients encountering inaccurate information. Both groups must learn to have open discussions about online research to build understanding and trust.
Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product LaunchInspire
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
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.
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
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.
Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Sup...Inspire
This document summarizes Inspire, a social network that connects patients and caregivers with pharmaceutical companies. It has over 11 million annual visits and 615,000 members across 208 health communities. The Mental Health America/Inspire Support Community launched in 2010 and has over 4,700 members discussing topics like bipolar disorder, depression, and schizophrenia. Inspire aims to provide an authentic, engaged, and trusted online space while empowering patients and promoting partners' resources. It is redesigning its platform to be mobile-first and better meet members' needs.
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.
Physician-patient interaction and the Internet: The Canadian ExperiencePat Rich
Physician-patient interactions are changing as both groups use the internet for health information. A survey found that most physicians search online for information and know patients do as well. While some physicians feel this has improved interactions by empowering informed patients, others worry about patients encountering inaccurate information. Both groups must learn to have open discussions about online research to build understanding and trust.
1) The document describes two case studies of surveys conducted to gather evidence on patient experiences with leukemia. The Living with Leukemia survey contacted over 2,300 leukemia patients and published results on their needs and journey.
2) The Acute Leukemia Global Quality of Life Survey was conducted across 10+ languages to identify quality of life issues for patients with acute leukemia. It tested hypotheses about factors impacting quality of life.
3) The document then provides guidance on how to use evidence gathered from such surveys for advocacy impact. It discusses using evidence to define unmet needs, inform strategy, develop new services, run awareness campaigns, and engage in health technology assessments and regulatory processes.
The document provides guidance on structuring qualitative and quantitative research. It discusses key steps like determining the problem, considering the broader context, and having a clear analysis strategy. It also outlines different types of research like literature reviews, quantitative surveys, and qualitative interviews. The document notes some common research outputs include data tables, written findings, presentations, and films. It concludes by discussing common problems like not involving patients or having an unclear focus, and provides tips to avoid these issues.
Technion lecture @T2med- Patients and ePatients are not third person wordUri Goren
This document discusses the importance of centering healthcare around patients' needs rather than what physicians do. It notes that patients are an underused resource and that moving to a patient-centered system could achieve better outcomes at lower costs. The document also discusses challenges like information overload for doctors, the rise of online information sources, and the need to engage patients. Examples from England show potential savings of £4.4 billion from more engaged "people powered" healthcare that addresses patients' holistic needs.
Patient engagement in clinical trials Martin Kelly
The document discusses improving patient engagement in clinical trials through digital methods. Only 2-5% of cancer patients currently participate in clinical trials. The top 3 solutions identified to engage patients were: 1) a clinical trial finder for patients to inform them of available trials, 2) virtual clinical trials conducted entirely online, and 3) tools to personalize clinical trials to individual patient needs/preferences. The document reviews several companies providing these types of solutions and proposes an experiment partnering with a CRO to test if a digital intervention increases patient enrollment and retention in a clinical trial compared to a control group without a digital intervention.
This document discusses the importance of patient preference studies in influencing health system decisions and outlines the role of patient advocates. It notes that patient preferences vary between stakeholders, diseases, and within diseases between subgroups. Developing robust patient preference studies requires expertise in methodologies, avoiding bias, attribute selection, and ensuring scientific rigor. The document advocates that patient organizations work with academics to design scientifically valid preference studies that capture patients' perspectives on treatment risks, benefits, and what constitutes an acceptable outcome for their condition. Ultimately, the document argues that no stakeholder should express preferences on behalf of patients and that data not directly gathered from patients should have limited weight in decision making.
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.
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.
The document discusses using analytics and care coordination to reduce hospitalizations and arrests of mental health patients. It notes that around 10% of patients are readmitted to psychiatric hospitals within 30 days of discharge. Care coordination aims to break this cycle through improved outcomes, treatment adherence, continuity of care, and identifying high-risk patients. Analytics tools can provide predictive modeling, population clustering, and care quality analysis to develop insights. The goal is to engage all stakeholders to deliver an integrated care plan through data-driven insights and coordination between providers.
HXR 2016: Designing to Support Mental Health -Dr. Kimberly O'Brien, Simmons C...HxRefactored
Leveraging technology to prevent adolescent suicide, the document discusses how suicide is a leading cause of death for adolescents and young adults. It presents data on suicide rates and risk factors from national surveys. The author describes the development of a mobile application called Crisis Care designed to help struggling youth communicate their pain to caring adults and access immediate support to prevent suicide.
Shared decision making: Changing the relationship between doctor and patientMarkus Oei
This document discusses shared decision making between doctors and patients. It defines shared decision making as a process where doctors and patients make medical decisions together by considering evidence-based treatment options, their risks and benefits, and the patient's values and preferences. The document notes that while shared decision making improves health outcomes, many patients are not aware they have treatment choices and doctors do not always discuss patient preferences. It argues we need decision support tools, reliable patient information from various sources, and ways to effectively deliver this information to patients to facilitate shared decision making in clinical practice.
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
Patient-generated data is health-related data created by patients to help manage their condition, including symptoms, medication adherence, and biometric data from wearable devices. This data is distinct from clinical data as it is recorded by patients outside of healthcare settings. Technologies allow widespread collection of patient data to improve monitoring and research. However, ensuring high quality, standardized data sharing while protecting patient privacy and engaging patients requires governance plans and may require significant resources from patient organizations.
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
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
This document summarizes a webinar about using hospital harm data and resources to inform quality improvement plans. It includes an agenda with presentations on the patient perspective, an organization's experience in Fraser Health, and tips for using the Hospital Harm Improvement Resource. It discusses why reducing hospital harms is important to patients, and Fraser Health's journey to reduce common harms like UTIs, pneumonia, and sepsis. It promotes engaging patients and provides links to resources on including the patient experience and engaging patients as partners in safety. Attendees are invited to learn more about the Hospital Harm project through listed websites and contacts.
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.
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
1) The document describes two case studies of surveys conducted to gather evidence on patient experiences with leukemia. The Living with Leukemia survey contacted over 2,300 leukemia patients and published results on their needs and journey.
2) The Acute Leukemia Global Quality of Life Survey was conducted across 10+ languages to identify quality of life issues for patients with acute leukemia. It tested hypotheses about factors impacting quality of life.
3) The document then provides guidance on how to use evidence gathered from such surveys for advocacy impact. It discusses using evidence to define unmet needs, inform strategy, develop new services, run awareness campaigns, and engage in health technology assessments and regulatory processes.
The document provides guidance on structuring qualitative and quantitative research. It discusses key steps like determining the problem, considering the broader context, and having a clear analysis strategy. It also outlines different types of research like literature reviews, quantitative surveys, and qualitative interviews. The document notes some common research outputs include data tables, written findings, presentations, and films. It concludes by discussing common problems like not involving patients or having an unclear focus, and provides tips to avoid these issues.
Technion lecture @T2med- Patients and ePatients are not third person wordUri Goren
This document discusses the importance of centering healthcare around patients' needs rather than what physicians do. It notes that patients are an underused resource and that moving to a patient-centered system could achieve better outcomes at lower costs. The document also discusses challenges like information overload for doctors, the rise of online information sources, and the need to engage patients. Examples from England show potential savings of £4.4 billion from more engaged "people powered" healthcare that addresses patients' holistic needs.
Patient engagement in clinical trials Martin Kelly
The document discusses improving patient engagement in clinical trials through digital methods. Only 2-5% of cancer patients currently participate in clinical trials. The top 3 solutions identified to engage patients were: 1) a clinical trial finder for patients to inform them of available trials, 2) virtual clinical trials conducted entirely online, and 3) tools to personalize clinical trials to individual patient needs/preferences. The document reviews several companies providing these types of solutions and proposes an experiment partnering with a CRO to test if a digital intervention increases patient enrollment and retention in a clinical trial compared to a control group without a digital intervention.
This document discusses the importance of patient preference studies in influencing health system decisions and outlines the role of patient advocates. It notes that patient preferences vary between stakeholders, diseases, and within diseases between subgroups. Developing robust patient preference studies requires expertise in methodologies, avoiding bias, attribute selection, and ensuring scientific rigor. The document advocates that patient organizations work with academics to design scientifically valid preference studies that capture patients' perspectives on treatment risks, benefits, and what constitutes an acceptable outcome for their condition. Ultimately, the document argues that no stakeholder should express preferences on behalf of patients and that data not directly gathered from patients should have limited weight in decision making.
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.
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.
The document discusses using analytics and care coordination to reduce hospitalizations and arrests of mental health patients. It notes that around 10% of patients are readmitted to psychiatric hospitals within 30 days of discharge. Care coordination aims to break this cycle through improved outcomes, treatment adherence, continuity of care, and identifying high-risk patients. Analytics tools can provide predictive modeling, population clustering, and care quality analysis to develop insights. The goal is to engage all stakeholders to deliver an integrated care plan through data-driven insights and coordination between providers.
HXR 2016: Designing to Support Mental Health -Dr. Kimberly O'Brien, Simmons C...HxRefactored
Leveraging technology to prevent adolescent suicide, the document discusses how suicide is a leading cause of death for adolescents and young adults. It presents data on suicide rates and risk factors from national surveys. The author describes the development of a mobile application called Crisis Care designed to help struggling youth communicate their pain to caring adults and access immediate support to prevent suicide.
Shared decision making: Changing the relationship between doctor and patientMarkus Oei
This document discusses shared decision making between doctors and patients. It defines shared decision making as a process where doctors and patients make medical decisions together by considering evidence-based treatment options, their risks and benefits, and the patient's values and preferences. The document notes that while shared decision making improves health outcomes, many patients are not aware they have treatment choices and doctors do not always discuss patient preferences. It argues we need decision support tools, reliable patient information from various sources, and ways to effectively deliver this information to patients to facilitate shared decision making in clinical practice.
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
Patient-generated data is health-related data created by patients to help manage their condition, including symptoms, medication adherence, and biometric data from wearable devices. This data is distinct from clinical data as it is recorded by patients outside of healthcare settings. Technologies allow widespread collection of patient data to improve monitoring and research. However, ensuring high quality, standardized data sharing while protecting patient privacy and engaging patients requires governance plans and may require significant resources from patient organizations.
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
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
This document summarizes a webinar about using hospital harm data and resources to inform quality improvement plans. It includes an agenda with presentations on the patient perspective, an organization's experience in Fraser Health, and tips for using the Hospital Harm Improvement Resource. It discusses why reducing hospital harms is important to patients, and Fraser Health's journey to reduce common harms like UTIs, pneumonia, and sepsis. It promotes engaging patients and provides links to resources on including the patient experience and engaging patients as partners in safety. Attendees are invited to learn more about the Hospital Harm project through listed websites and contacts.
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.
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
Patient guide: what should I expect from assessment and diagnosis of COPD?NHS Improvement
This document provides information about what to expect from an assessment and diagnosis for chronic obstructive pulmonary disease (COPD). It explains that the assessment will include lung function tests, a physical exam, blood oxygen tests, and possibly an x-ray. The health care professional will examine the results to determine if COPD is present and how severe it is. If diagnosed with COPD, the person will be told the diagnosis, encouraged to ask questions, and helped to create a care plan for managing their condition.
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?”
Patient guide: What should I expect from managing flare-ups of my COPD?NHS Improvement
This document provides information about what to expect when managing flare-ups of chronic obstructive pulmonary disease (COPD) at home and in the hospital. It discusses what should happen during a hospital stay for a COPD flare-up, including expected treatment and care plans. It also outlines the support and follow-up care that should be provided after leaving the hospital to help manage COPD at home, such as having an action plan and access to pulmonary rehabilitation. The overall goal is for patients to have the knowledge, support and care needed to manage their condition and avoid future hospitalizations.
Utilising real-world evidence to achieve precision medicine in COPDZoe Mitchell
This document discusses precision medicine approaches to tailoring COPD management to individual patient needs and phenotypes. It reviews current guidelines for COPD pharmacotherapy and how to optimize therapy for the specific patient. It provides an overview of treatable traits and phenotypes in COPD and examples of targeting treatment based on a patient's profile, such as using ICS for an eosinophilic phenotype. The document also discusses two case scenarios - one involving a patient with recurrent exacerbations and how to determine the best treatment approach, and another involving optimizing therapy for a returning patient.
The document discusses assessment of COPD patients including obtaining a history of symptoms, exposures, and family history. Physical exam findings and spirometry are used to determine severity and exacerbation risk. Comorbidities are also assessed. The goals of assessment are to determine disease severity, impact on health status, and risk of future events. Spirometry is required to diagnose COPD, defined as a post-bronchodilator FEV1/FVC ratio of less than 0.70.
The document summarizes research on patients with chronic obstructive pulmonary disease (COPD) and common comorbidities. It found that 87.5% of COPD patients studied had two or more comorbidities, with the most frequent being cardiovascular diseases (65%), tuberculosis (42.5%), and lung cancer (10%). Treatment costs increased substantially with more severe COPD stages and additional comorbidities. Effectively treating COPD and associated illnesses is important since comorbidities greatly influence COPD progression and outcomes.
Lecture 4 COPD Course: Educationg the patient with COPD Dr.Mahmoud Abbas
This document discusses educating patients with COPD. It explains that patient education is a 4-step process of assessment, planning, implementation, and evaluation. The assessment step involves identifying barriers to learning like health literacy levels, language, and readiness to change. Planning establishes goals and teaching methods based on cognitive, psychomotor, and affective learning domains. Implementation involves teaching using various styles aligned with visual, auditory, and tactile learner preferences. Evaluation assesses whether education improved patient understanding and skills. Key principles of adult learning that enhance teaching include making it relevant, giving feedback, and incorporating active and multi-sensory techniques.
1. COPD is diagnosed clinically based on symptoms and confirmed via spirometry showing post-bronchodilator FEV1/FVC <0.7. Treatment involves bronchodilators, inhaled corticosteroids, supplemental oxygen and managing exacerbations with bronchodilators, corticosteroids and antibiotics.
2. Exacerbations are acute worsening of symptoms and defined as increased dyspnea, cough, sputum volume and purulence. Hospital admission is required for severe exacerbations or inadequate response to outpatient management.
3. Common causes of exacerbations include lower respiratory infections from bacteria like Haemophilus influenzae or viruses. Treatment involves bronchodilators
1. JS, a 74-year-old man with COPD, heart failure, and pneumonia, presents with shortness of breath and fever. His medical history and physical exam reveal severe COPD and risk factors for exacerbation.
2. Chest X-ray confirms right lower lobe pneumonia. ABG results show respiratory acidosis. The patient is treated with antibiotics and oral steroids in the hospital with improvement.
3. Proper management of COPD includes educating patients about self-care, monitoring for exacerbations, promoting smoking cessation, and referring to pulmonary rehabilitation.
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."
Healthcare is undergoing a transformation. Consumers want to make informed choices and take control of their lives, and pharma companies must be ready to meet their needs. This means building a new healthcare ecosystem that places the patient at its center, with the “person” fully engaged in his or her own healthcare. But with this move to person-centric healthcare, payers and providers are no longer the main decision makers.
So what does this mean for today’s marketers?
In this exclusive Social On Us webinar we discuss:
- Where marketing is failing to address healthcare concerns
- How “big data” is a change-driver for a new healthcare ecosystem
- New opportunities for predictive and preventative medical intervention
- Impact of digital healthcare on patient privacy
Director Lee Rainie presented to physicians, administrators, and staff at Providence St. Joseph Medical Center in Burbank, California on January 12 on understanding social networking and online health information seeking.
The document summarizes PatientsLikeMe, a website that allows patients to track their health indicators, share their experiences, and connect with others who have similar conditions. It discusses how social media and mobile technologies have organized health information sharing and given individual stories collective wisdom. Patients are able to engage on the site by creating health profiles, finding support from others, learning from community reports, and bringing their improved understanding to doctor appointments to facilitate treatment conversations. The site aims to transform individual experiences into aggregated data and put experiences into clinical context to advance medical knowledge.
Digital health channels are increasingly being used in Asia to supplement information and support for healthcare needs. A survey of 1,238 consumers across 6 Asian markets found that 89% had accessed the internet for healthcare information, primarily about conditions and available treatments. While physicians remain an important source, digital channels provide a way for patients to educate themselves and get support due to time constraints with doctors. The survey showed consumers are open to various digital communication methods from healthcare providers going forward.
This document provides an overview of a conference on social media, web-based interventions, and technologies for participatory health. The conference included sessions on introductions to participatory health research and social media, self-monitoring, web-based interventions, and workshops and panel discussions. Survey results showed that most attendees were interested in internet interventions, social media, and participatory health. The document also provides the program schedule and presentations.
Crotty engaging patients in new ways from open notes to social mediaTrimed Media Group
The document discusses new ways to engage patients through open notes and social media. It describes initial findings from the OpenNotes project that showed patients found value in reading clinical notes. It also outlines how patients use social media to find health information and connect with others. The document argues that healthcare providers can leverage these technologies and concepts to reduce information asymmetry, educate patients, and learn from them to provide more engaging and effective care.
Digital technologies like wireless sensors, genomics, EHRs, mobile apps, and big data analytics can significantly help patients but cannot replace human compassion and advocacy. These technologies can improve patient engagement, access to information, and personalized care. However, the most effective patient advocates will still be human beings who can combine technology tools with qualities like empathy, communication skills, and devotion of time to help patients navigate the healthcare system.
Digital communications bring opportunity and risk to the therapeutic relationship. Doctors and other health professionals can learn to collaborate in person and online to protect informed decision making. Modified slightly from a talk August 8 2019 at Brigham & Women's Hospital/Dana-Farber Cancer Institute.
Brodeur Parnters and UNC School of Social Work -- Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities. Posted on Regulations.gov public docket FDA-2009-N-0441 on 12/10/09.
Digital or print medical journals readership data 2013Gwen Riggs
Digital or print medical journals readership data from 2013 shows:
- 89% of doctors read the print version of medical journals compared to 51% who read digitally.
- Younger doctors and key opinion leaders are more likely to access articles digitally.
- Nearly half of doctors surveyed use both print and digital platforms to read current issues of journals.
United healthcare trends discussion by Frost & SullivanModupe Sarratt
The document discusses key trends, opportunities, and challenges in the healthcare industry related to growth and innovation. It identifies mobility in healthcare/mHealth and cloud computing in healthcare as top hot topics according to survey respondents. The document also summarizes findings regarding telehealth and mHealth markets, consumer views on how these technologies may improve convenience, quality and costs of care, and opportunities to leverage big data, engage consumers, and improve medical device connectivity.
e-patient, New usage of IT in controling of diseaseSaeid Safari
This document discusses the potential for using virtual communities and networks to improve hepatitis care and research in Iran. It outlines several key benefits, such as allowing healthcare providers, patients, and caregivers to connect and share information regardless of physical location. This could help pool regional, national, and international expertise to advance treatment and research. The document also discusses how virtual communities have already revolutionized some aspects of healthcare by empowering patients and facilitating collaboration between different stakeholders.
Patient Centered Information Technology focuses on moving away from a paternalistic, doctor-centered approach to one that is more patient-centered through the use of online communication and access to health records. Studies showed that online communication via secure messaging improved patient satisfaction and reduced phone calls. Releasing test results and doctor's notes online did not increase confusion, anxiety or health utilization. Patients felt more empowered and in control of their care. The future of patient access online may include untethered personal health records on mobile devices and greater use of social media for peer-to-peer sharing of health experiences and information.
Leveraging the power of social media in healthcare researchInSites on Stage
Leveraging the power of social media in healthcare research, presented by Robert Dossin at the MRS Healthcare Congress in London (UK) on Thursday March 6, 2013.
This document discusses the experiences and perspectives of an ePatient named Erin Gilmer. An ePatient is someone who is equipped, enabled, empowered and engaged in their own health care through online resources and digital technologies. The document outlines Erin's journey of coping with multiple chronic conditions and becoming more involved in her own care management. It also explores how ePatients access health information online, use tools like social media and apps, and want to collaborate as partners with their healthcare providers. Both the opportunities and challenges of new technologies for patients and providers are examined.
Similaire à What Do Patients Really Want Out Of Adherence Technology? (20)
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.
Successfully Navigating the Parent Landmines in the NICU Inspire
The document provides tips for nurses on successfully navigating common challenges, or "landmines", faced by parents in the neonatal intensive care unit (NICU). It discusses several key landmines including welcoming parents for the first time, helping parents bond with their infant, and promoting breastfeeding. The document offers insights from surveys of over 200 parents who had infants in the NICU. It provides tips for nurses on empowering parents, supporting parent-infant bonding, and addressing issues such as breastfeeding and pumping. Overall, the document aims to help nurses minimize stress for parents in the NICU by anticipating challenges and standardizing a supportive approach.
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
This document discusses optimizing social listening and monitoring on social media and digital platforms. It recommends setting up an analysis plan and search lexicon to focus social listening efforts. Observing natural consumer interactions can uncover unmet needs and opportunities. Shortening timelines around promotional and research activities based on social listening allows for more relevant interactions. Targeted messaging can address consumer needs identified on social media.
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.
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.
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.
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.
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.
Lives Turned Upside Down: The Impact of SarcoidosisInspire
Sarcoidosis is a rare inflammatory disease that can affect any organ and impacts over 200,000 people in the United States. It often takes years to diagnose, with over 14% of patients waiting over 5 years. The disease leaves patients feeling like "a shell of a man" and "not that queen" they once were, as it disrupts their ability to work, participate in family life, and causes fatigue, side effects of medication, depression, and more. A survey found the top burdens of sarcoidosis are fatigue, side effects of medication, inability to work, depression, and its effects on family life.
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.
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."
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.
Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial P...Inspire
Presentation by Inspire CEO Brian Loew to Society of Clinical Research Associates (SoCRA), Harnessing Social Media to Advance Clinical Research conference, August 2, 2013
The document describes how Katherine Leon, suffering from spontaneous coronary artery dissection (SCAD), took to online forums and social media to connect with others experiencing SCAD and learn more about the condition. Through these online connections, Dr. Sharonne Hayes was able to launch a pilot research study on SCAD and recruit participants. The study demonstrated that patient-initiated online networks can effectively engage patients and recruit for research studies about rare conditions. Initial findings from the study were published in Mayo Clinic Proceedings in 2011. The future of research includes more active participation by patients in helping to advance understanding of their conditions.
Muktapishti is a traditional Ayurvedic preparation made from Shoditha Mukta (Purified Pearl), is believed to help regulate thyroid function and reduce symptoms of hyperthyroidism due to its cooling and balancing properties. Clinical evidence on its efficacy remains limited, necessitating further research to validate its therapeutic benefits.
Here is the updated list of Top Best Ayurvedic medicine for Gas and Indigestion and those are Gas-O-Go Syp for Dyspepsia | Lavizyme Syrup for Acidity | Yumzyme Hepatoprotective Capsules etc
Basavarajeeyam is a Sreshta Sangraha grantha (Compiled book ), written by Neelkanta kotturu Basavaraja Virachita. It contains 25 Prakaranas, First 24 Chapters related to Rogas& 25th to Rasadravyas.
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- Video recording of this lecture in English language: https://youtu.be/kqbnxVAZs-0
- Video recording of this lecture in Arabic language: https://youtu.be/SINlygW1Mpc
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
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Osteoporosis - Definition , Evaluation and Management .pdfJim Jacob Roy
Osteoporosis is an increasing cause of morbidity among the elderly.
In this document , a brief outline of osteoporosis is given , including the risk factors of osteoporosis fractures , the indications for testing bone mineral density and the management of osteoporosis
share - Lions, tigers, AI and health misinformation, oh my!.pptxTina Purnat
• Pitfalls and pivots needed to use AI effectively in public health
• Evidence-based strategies to address health misinformation effectively
• Building trust with communities online and offline
• Equipping health professionals to address questions, concerns and health misinformation
• Assessing risk and mitigating harm from adverse health narratives in communities, health workforce and health system
Rasamanikya is a excellent preparation in the field of Rasashastra, it is used in various Kushtha Roga, Shwasa, Vicharchika, Bhagandara, Vatarakta, and Phiranga Roga. In this article Preparation& Comparative analytical profile for both Formulationon i.e Rasamanikya prepared by Kushmanda swarasa & Churnodhaka Shodita Haratala. The study aims to provide insights into the comparative efficacy and analytical aspects of these formulations for enhanced therapeutic outcomes.
4. 4
Inspire Background
Social network for
PTs and CGs:
•~630,000 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
Purpose: To bring the perspectives of e-
patients to life on a large scale
Launch: After several months of planning
and design, Inspire began sending survey
invitation emails to its members on
December 11, 2014.
Fielding: In order to reach the ~490,000
members who have opted to receive such
communications, invitations had to be sent
evenly through December 23rd.
Closing: The survey was officially closed
on January 8, 2015.
Impact: During the month in which the
survey was available, 13,633 Inspire
members completed the assessment.
Annual Survey Background
6. 6
Inspire members (and survey respondents) are primarily patients and
caregivers with the inclusion of some ‘health advocates’
Respondents are primarily from the U.S. but do represent 100 countries
and 6 continents
Average age of survey respondents was 53.6
Gender split was largely (~75%) female and only ~25% male
Using ICD-9/10 codes as a guide for categorization, the top-5 most
common health areas represented by survey respondents were:
Oncology (5,557 respondents)
Autoimmune (3,793 respondents)
Metabolic (2,881 respondents)
Neurological (2,625 respondents)
Respiratory (2,214 respondents)
Annual Survey Respondent Overview
8. 8
Patients reported turning to a number of (primarily) online sources to
obtain information about and better understand their health conditions
Seeking Medical Information
1%
3%
11%
12%
22%
24%
27%
31%
38%
42%
49%
51%
76%
78%
0% 50% 100%
None
Other
Videos
In-person patient support groups
Support and advocacy groups
Nurses
Other patients
Friends and family
Materials provided by the doctor’s office
Books or magazines
Online support communities
Medical/scientific articles
Online search engines (e.g., Google, Bing)
Condition-specific websites or blogs
Sources of information used for health conditions
% of Responses
Condition-specific
websites or blogs
was also reported
to be the most
helpful source of
information used to
better understand
patients’ health
conditions
9. 9
Although patients widely use online tools to help them better understand
their health conditions, mobile apps are not as strongly sought after
solutions
Incidence of Mobile App Usage
9%
8%
12%
72%
Frequency of mobile app usage for
healthcare
Always Frequently Sometimes Never
While mobile app usage is more
common among younger patients
than older ones, this is still a largely
untapped frontier in healthcare
Key drivers limiting use of mobile apps
for healthcare:
1) Lack of ownership of a
smartphone (finances), and
1) Privacy concerns
10. 10
Patients who use smartphone apps to manage their conditions do so to:
How Mobile Apps are Used
- Help prepare for doctor’s visits……………………..
- Search for information online……………………….
- Set up dosing reminders……………………………….
- Take notes at MD’s office………………………………
- Take photos of symptoms……………………………..
- Other……………………………………………………………….
Women use their smartphone more frequently
across each of these options than men
59%
56%
55%
35%
30%
5%
‘Respiratory’ patients are most likely to use a
smartphone to “Prep for MD appts”, “Search for
information online” and “Take notes at
physician's office”
Autoimmune patients are most likely to use a
smartphone to “Take photos of symptoms”
11. 11
Of the 72% of survey respondents who have never used a smartphone for
their health conditions, less than half felt that, in theory, this type of tool
would be helpful in managing their health conditions
Limitations to Mobile App Usage
‘Autoimmune’ and ‘Neurological’
patients are most likely to be
receptive to using smartphone apps
Across patient age groups, the idea of
using a smartphone app to help
patients decreases in prevalence as
younger respondents were almost
twice as likely to answer affirmatively
than those 65+
Women think that a smartphone app
would be a helpful tool more than
men
13. 13
While they are open to a variety of tools/materials to use with their
physicians, patients most widely preferred electronic/online materials
Suggested Tools for Improved Healthcare
59% 57%
47%
42% 40%
0%
20%
40%
60%
80%
100%
Electronic, Detailed
Symptom Tracker
Access to online
webinars or in-person
conferences/speaker
sessions to learn
more about your
condition
Support materials for
friends/family
members detailing
your condition and its
symptoms
Printed, Detailed
Symptom Tracker
Tips/tactics around
better ways to
communicate with
your physician(s)
Recommended tools to help patients during doctor’s visits
% Responses
14. 14
Even among this 'engaged' population of patients and caregivers who have
turned to the internet in search of information and support for their
condition(s), technology-based solutions are not always what's desired
Adherence Tool Considerations
“I look for patient-driven information and
research rather than info coming from
pharma companies.”
The need for trust
“I'm old school I like everything on paper
in front of me. I never go on line
everyone’s cancer is treated differently if I
would go on line I would have myself
dead and buried I stay off”
“Big Pharma is evil. Period.”
“Have you ever been to a Drs apt lately??
Aside from your fifteen minute meeting
with a dr who. Please tell me who. What
dr gives out helpful advice to better your
health??”
In physician communication research
conducted several years ago in the Type II
Diabetes market, it was found that
physicians were trying to ‘empower’ their
patients to be adherent to treatment…
Client Case Study: “An arm and a leg”
…However, they were focusing on the
complications associated with T2D…
…Everything from Increased Medication
Burden to Neuropathy to Loss of Limbs to
Stroke and Death were mentioned by MDs
to their ‘at-risk’ patients…
…Although these are the realities of T2D,
scare tactics are not necessarily the best
motivator
16. 16
Currently in a pilot test with a Top-10 pharma client, Inspire is exploring
targeted messaging – providing MLR-approved emails to community
members after they post an appropriate message on Inspire
Targeted Messaging
Very Interested
Somewhat
Interested
Somewhat
Uninterested
Not at all
InterestedNeutral
23% 27% 23% 8% 20%
17. 17
While these patients use a variety of social media outlets personally, they
typically do not turn to these same sources for their health conditions
Social Media Usage
23%
65%
25%
11%
19%
0
25%
14%
40%
4%
13%
21% 25%
18%
1% 2%
28%
4% 2%
14%
4%
33%
0%
20%
40%
60%
80%
100%
Personal Use Medical Use
Interestingly, the overall usage of Condition-specific websites or blogs INCREASES among older patient populations
Consistent with the previous slides, as patients age, there is less insistence on an electronic symptom tracker; however, all other solutions remain viable options
Usage of social media is much greater among women than men, both personally and for health purposes. There are only a few outlets where Men are just as, if not more, active than women LinkedIn and Google+
Personal, social media usage is also strongest among younger patients with steep drop offs occurring with older age groups starting at 41+
Social media usage for health purposes, stays relatively consistent as patients age, until you get to the 65+ age group.