The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
How to communicate scientific and medical information to patients, advocates ...jangeissler
How to communicate scientific and medical information to patients, advocates and caregivers, presented by Jan Geissler at the European Medical Writer's Symposium (EMWA) on 12 May 2016
Learning from marketing rapid development of medication messages that engage...LydiaKGreen
The document describes a study that partnered healthcare researchers with advertising professionals to develop advertising-style messages to encourage patients with chronic kidney disease to discuss medication options with their doctors. They aimed to assess the feasibility of this partnership approach and test whether the messages would be acceptable and effective. The teams created 11 initial messages, tested them with patients and doctors via surveys, refined 5 messages, and conducted focus groups to identify the 3 most persuasive messages. Focus group feedback suggested the approach could be acceptable if used to support patient-provider relationships and had an evidence base, and that messages were more motivating if they elicited personal identification and clear understanding.
1. Improving efficiency in cancer care is urgently needed to help relieve budgetary pressures and ensure equal access to advances in treatment for all patients. Up to 20% of healthcare spending is estimated to be wasted on ineffective interventions.
2. Advances in cancer diagnosis and treatment promise to transform outcomes, but without improving efficiency, governments may not be able to afford these innovations. Variations in cancer outcomes between countries suggest there is room for improvement.
3. Reducing inefficiencies could free up resources to provide more effective care and ensure all patients who could benefit have access to innovative new treatments in a timely manner. This will require new forms of collaboration between
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.
Chronic diseases are the leading cause of death in the US. Managed care organizations implement disease management programs like smoking cessation programs to help prevent chronic diseases and lower costs. These programs aim to eliminate risk factors for disease such as smoking and provide incentives, care management, and access to services to help patients quit smoking. Quality of care is evaluated through structure, process and outcomes to ensure these programs are effective.
This document summarizes information on patient engagement and telemedicine. It defines patient engagement as involving patients in decisions about their health and using interventions to promote healthy behaviors. When there are multiple treatment options, shared decision making uses decision aids to help patients choose based on their values. Research shows patient engagement can lower costs by reducing hospital admissions. Telemedicine uses technology to deliver healthcare remotely and can increase access, especially for rural patients, while improving outcomes and reducing costs. The document recommends establishing a task force to advance telemedicine in Maryland.
The document discusses efforts by the US Department of Health and Human Services (HHS) to address the growing challenges posed by multiple chronic conditions. HHS released a 2010 strategic framework with 4 goals: 1) foster health system changes like accountable care organizations and medical homes, 2) empower individuals through self-management programs, 3) equip clinicians with guidelines and training, and 4) enhance research. Since then, HHS has made progress in areas like expanding self-management programs, testing new care models, establishing payments for non-face-to-face care management, and increasing focus on comorbidities in clinical trials and guidelines. However, more accelerated efforts are still needed across all goals to better meet the needs of the growing multiple
This document describes the innovative care model of ChenMed, a primary care-led group practice in Florida that serves low-income elderly Medicare patients. Key elements of the ChenMed model include:
- Offering a "one-stop-shop" approach with on-site medical specialists, dental care, and pharmacy services to improve access and convenience.
- Smaller physician panels of 350-450 patients allowing for more time with each patient and intensive preventive care and health coaching.
- On-site physician dispensing of pre-sealed medications at visits to improve medication adherence for chronic conditions.
- A collaborative physician culture with peer review and customized technology.
Preliminary results show this model has improved medication adherence
The role of patients and healthcare providers in translational medicinejangeissler
The role of patients and healthcare providers in translational medicine, presented by Jan Geissler at the European Commission's Personalized Medicine Conference 2016 on 1 June 2016 in Brussels
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.
This document outlines a navigation matrix that provides a framework for standardizing and assessing cancer patient navigation programs. The matrix covers key areas like stakeholders, community partnerships, risk factors, metrics, marketing, navigator responsibilities, clinical trials involvement, and disparities focus. It also provides an example application of the matrix to the navigation program at Billings Clinic, describing their program evolution and how they meet various areas of the matrix. The overall goal of the matrix is to help cancer centers standardize, evaluate, and advance their navigation programs over time.
Redefining the role of patient support programs: Shifting the focus towards p...SKIM
Presented by:
Alex Zhu, Manager
Ariel Herrlich, Analyst
The recent shift toward consumerism and patient empowerment is driving companies to reevaluate the role and design of patient support programs. Historically, pharmaceutical manufacturers implemented support programs largely as a way to address patient non-adherence.
These programs were often single-based solutions designed to meet mass market needs. Next generation patient support programs will go beyond simple adherence to address holistic disease management through individualized, patient-centric service offerings.
Using a case study, we illustrated:
- How to evaluate your current patient support program offerings, using a combination of standard and non-standard metrics and exercises
- Re-define what “value” means in a world of patient-centricity and personalized care
- Assess the impact/ROI of potential new service offerings and enhancements
Dr. Edward Wagner, Director (Emeritus) MacColl Center, Senior Investigator, Group Health Research Institute addresses the 2014 Weitzman Symposium on The Future of Primary Care
This lecture discusses patient decision aids which are tools that help patients become involved in healthcare decisions by providing information on their options and clarifying personal values while complementing practitioner counseling. Patient decision aids can be used during or outside clinical encounters. Shared decision making is measured by evaluating the decision process quality and choice quality. There are standards for patient decision aids through organizations like IPDAS. Health information technology could help connect patients to decision aids and support shared decision making between patients and providers.
This white paper discusses the need for collaboration across stakeholders in oncology care to define value and access to cancer therapies. It notes increasing drug development costs and the need for value-based medicine to provide both enhanced outcomes and lower costs. Real-world evidence from data on patient outcomes is important for evaluating value and informing decisions by regulators, payers and other stakeholders. Accountable care organizations and a shift to more patient-centered, value-based models in the US and globally are changing expectations and incentives around oncology drug development.
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.
This document discusses the different roles patients can play in health technology assessment and decision making regarding new treatments. It identifies four types of patient voice: 1) as information providers who can provide key details about diseases and treatments to assessment bodies; 2) as decision makers who should be directly involved in decision making committees; 3) as policy makers who can help shape the processes by which patient voice is incorporated; and 4) as individuals making their own informed choices about treatments. The document argues that all four types of patient voice are important and should be involved in the assessment and decision making process.
This document discusses the role of nurse navigators in managing cancer care programs. It outlines the responsibilities of nurse navigators in identifying barriers to care, educating patients, maintaining communication, and linking patients to resources. It also evaluates the impact of navigation programs through measures of patient and physician satisfaction surveys, patient volume, and qualitative feedback from patients and physicians. Navigation programs aim to improve care coordination and help patients cope with their cancer diagnosis and treatment.
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.
Patient advocacy groups play an important role in supporting rare cancer patients and influencing healthcare policy and research. They provide crucial information to help patients make informed decisions. They also advocate for patient needs and priorities to be addressed in policy and research. Advocacy groups can contribute to research by identifying important issues, helping with patient recruitment and monitoring, and ensuring research results are disseminated. International rare cancer advocacy organizations collaborate to support patients globally.
Clinical trials are facing rising costs and complexity due to difficulties recruiting and retaining patients. There is a growing recognition in the pharmaceutical industry that patient engagement must be improved by making trials more patient-centric and reducing the burden on participants. This will involve reforming traditional trial procedures and moving trials closer to patients in their homes and communities through virtualization, telemedicine, and community partnerships. Viewing patients as collaborators rather than just subjects and integrating their needs and perspectives into trial design is seen as key to improving development times and success rates.
A Pharmaceutical Industry's Role in Clinical Trial Improvement.pdfSollers College
The drive to quickly develop a vaccine in record time should concentrate attention on common bottlenecks in the clinical trial process, as well as steps that the life sciences industry could take to reduce those bottlenecks and speed up the process for other drug candidates.
CSC Insight into Patient Access to Care in CancerBev Soult
The document summarizes key findings from a survey of 692 cancer patients and their families about access to care. It finds that while most patients had health insurance, many did not receive recommended social/emotional support services or referrals to such services. Over 20% reported delays in care and nearly 20% felt they did not have adequate time with providers. Only 34% discussed costs of treatment with providers. Nearly half paid more for care in the past year due to insurance premiums, deductibles, and co-pays. Over a third were seriously concerned about out-of-pocket costs and bankruptcy from medical expenses. The survey aimed to understand challenges patients face in accessing comprehensive cancer care.
This document summarizes a workshop hosted by HealthXL to discuss new models of care. It notes that increasing healthcare costs are driving the need for alternative delivery methods. The workshop brought together 20 professionals to brainstorm opportunities for transitioning care from hospitals to communities and homes. Key areas for new care models that emerged were in-home care for seniors, chronic disease management, and improved health management. Barriers to new models included difficulties proving cost savings and technology infrastructure challenges. The group prioritized collaborating with community groups to deliver care and reduce health risks. Next steps included further exploring digital health solutions and collaborating to address challenges raised.
Making the case for cost-effective wound managementGNEAUPP.
This document discusses cost-effective wound management and making the case for it. It begins by explaining the challenges in wound management, including increasing prevalence of wounds and difficulty collecting data on clinical efficacy, effectiveness, and costs. It then discusses common myths around cost-effectiveness, clarifying that cost-effective does not mean cheaper but provides benefits at a reasonable cost compared to alternatives. The document outlines different types of economic analyses used in healthcare, particularly cost-effectiveness analysis, and discusses understanding costs from various perspectives.
The Breast Cancer Update began in 1996 as an educational program organized by the Delaware Breast Cancer Coalition to provide healthcare professionals and the public with information on the latest topics in breast cancer diagnosis and treatment. It started as a panel discussion with regional experts and grew to include keynote speakers on a wide range of topics. Over the years, the Update has expanded from hosting 100 participants to 400, requiring larger venues. While initially planned by an education committee, today the Update Committee explores current issues and themes. Nationally recognized speakers have helped make the Update impactful for raising awareness of the Coalition's services and shaping its programs.
Barbara Wood - Partnership working patients, public & the community #hcs15NHShcs
This document discusses partnership between patients, the public, and healthcare professionals and scientists. It argues that true partnership requires equal participation from all parties in planning and delivering healthcare. The future patient will be more informed about their health through technology, will manage their own care through access to online records and test results, and will have more choices. Healthcare scientists can partner with patients by making complex medical data understandable and by codesigning new models of integrated care delivery. Examples of current partnership initiatives include PatientView, which allows patients to access test results online, and a patient-held record developed together for thalassemia patients. Moving forward will require embracing new roles for healthcare scientists that leverage their skills and involving all stakeholders in redesigning healthcare systems
INFORMATION SHARING AND SHARED DECISION MAKING IN CLINICAL .pptxSuryansh Agrawal
Important of information sharing is vital to safeguarding and promoting the welfare of children, young people and adults. The decisions about how much information to share, with whom and when, can have a profound impact on individuals' lives. It could ensure that an individual receives the right services at the right time
This document summarizes PCORI's efforts to engage patients in research and tool development. It discusses PCORI's priorities in comparative clinical effectiveness research and shared decision making. Examples are provided of pilot projects developing tools like a digital portal for multiple sclerosis patients and integrating patient-reported outcomes into arthritis care. PCORI's vision for a National Patient-Centered Clinical Research Network is outlined, with plans to fund Clinical Data Research Networks and Patient-Powered Research Networks through cooperative agreements.
New Technologies Close the Recruitment GapJohn Reites
Applied Clinical Trials (15Sep2014)
Optimizing Patient Enrollment in Global Clinical Trials
Overcoming enrollment issues due to changes in country requirements, how to create less burdensome global protocols with the patient in mind, how to decrease the cost of medicines and care, how to incorporate local assessments/reduce travel, mobile technologies used in global enrollment procedures and the potential of registries to enhance recruitmentless
The Kaiser Permanente Homeless Navigator Pilot Program in Woodland Hills, California connects homeless patients with community resources to help them find housing and other services, placing over 576 homeless patients in shelters and programs since 2012. The program uses a team approach involving medical, social work, and community staff. It has been successful in transforming lives and ending homelessness for many patients.
Lexington Health Practice 'The future of Market Access' Interactive PamphletEmily Stevenson
Lexington Health Practice recently held a breakfast event to discuss the future for market access in England. The breakfast, the first in a series, examined the Health Technology Appraisal (HTA) environment and facilitated a discussion amongst individuals who work closely with and amongst the pharmaceutical industry, examining how the mechanisms in place can be improved to ensure equitable access to medicines.
Rethinking Value Based Healthcare
Around the world healthcare providers are busy exploring how value-based healthcare can both improve the efficiency and effectiveness of healthcare delivery and seed new opportunities for innovation. Continuing our collaboration with Denmark, we are very pleased to release a new perspective on how VBHC can have greater impact in practice. Based on insights from a recent event hosted by DTU Executive Business Education and undertaken in partnership with Rethink Value, this point of view looks at the key issues for patients, physicals, providers and payers.
It explores some of the associated implications for healthcare systems worldwide, highlights several leading early examples of VBHC in practice and looks at how it can have impact at scale. Recommendations focus on the structure of care, key metrics, moving beyond pilots, changes in reimbursement models and the need for greater insight sharing and deeper collaboration.
For related Future Agenda research see www.futureofpatientdata.org
> Patient engagement
> Patient advocacy groups
> Patient focused drug development
> Patient reported outcomes
> Patient centric clinical trials
> Patient preference studies
> Make patients as partners in research
> Institutionalised involvement - NICE, EMA, US-FDA
> Indian perspective
> Drivers for involving patients
How patient subpopulations are changing the commercialization of oncology pro...IMSHealthRWES
An excerpt from the latest issue of AccessPoint, looking at how genomic profiling data is transforming our understanding of patient subpopulations - a key to targeting treatments with greater precision
IMS Health RWES: The Future of Real-World Insights in CancerIMSHealthRWES
The document discusses IMS Health's real-world evidence solutions for cancer, including their cancer data ecosystem. The ecosystem combines various real-world data sources like medical claims, EMR data, and genomic data from over 15 million anonymous cancer patients. It provides comprehensive insights through innovative analytics to help address challenges across the cancer care continuum for clinicians, payers, pharmaceutical companies, patients, and advocacy groups.
IMS Health at ISPOR - Washington DC - May 2016IMSHealthRWES
This document provides information about IMS Health's activities and participation at the ISPOR 21st Annual International Meeting from May 21-25, 2016 in Washington, DC. The document outlines IMS Health's educational symposium titled "How real-world evidence (RWE) can enable pharma to partner in healthcare delivery" as well as several research posters, presentations, and workshops led by IMS Health experts on topics related to real-world evidence and its use in healthcare. Members of IMS Health's global RWE Solutions team will be available at the company's booth throughout the event.
IMS Health Real-World Evidence BrochureIMSHealthRWES
IMS Health is a global healthcare company that provides real-world evidence solutions to solve healthcare challenges. They use large datasets, advanced technologies and methodologies, and strategic expertise. Their Real-World Evidence Solutions team has opportunities for scientists, researchers, data analysts, product developers, consultants, and marketers to help clients improve patient outcomes. Employees can gain global experience, see the impact of their work, and be rewarded in a meritocratic environment. In one example, they created an algorithm to help diagnose a rare disease faster by identifying high-risk patients.
AccessPoint - 9th Issue - November 2014IMSHealthRWES
This document summarizes an article from IMS Health Real-World Evidence Solutions & HEOR. It discusses three main topics:
1) How new research using real-world evidence is revealing insights into diabetes treatment outcomes and understanding patient subgroups. This is helping to improve care provision.
2) Trends in real-world evidence, including new data strategies, greater involvement of commercial teams, and increased collaboration with external stakeholders.
3) Advancements in real-world evidence, such as improved data sourcing, predictive modeling techniques, and leveraging data from Scandinavia to enable disease-level insights. This is helping to demonstrate treatment value and support care management.
IMS Health Workshop World Orphan Drug CongressIMSHealthRWES
This document provides an agenda for a workshop titled "Using real-world data to find undiagnosed patients with rare diseases" hosted by IMS Health at the World Orphan Drug Congress from April 20-22 in Washington D.C. The workshop will explore how real-world data can help address underdiagnosis of rare diseases. Speakers will discuss using large-scale real-world data to transform understanding of rare diseases, and present case studies of companies leveraging real-world data. The workshop will also cover using predictive modeling of real-world data to identify undiagnosed rare disease patients and new engagement models with healthcare providers and payers to increase rare disease treatments.
How predictive analytics can help find the rare disease patientIMSHealthRWES
This document discusses how predictive analytics using real-world data can help identify undiagnosed rare disease patients. It describes two case studies: 1) A screening algorithm identified potentially undiagnosed patients for a rare multi-system disease with a high risk prevalence of 20.5% compared to 0.7% of the population. 2) An analysis of a rare cardiac disease identified health system barriers like variability between diagnostic centers that could cause under diagnosis. While initial results are promising, challenges remain around data privacy, sample size, and clinician adoption of screening algorithms.
Prospective identification of drug safety signalsIMSHealthRWES
At a time of growing demand for more accurate and timely
drug safety evidence, a landmark study supports the value of
electronic medical records (EmR) for detecting new adverse
reactions.
- The document analyzes misperceptions about migraine and its treatment. It finds that while migraine affects more women, over half of diagnosed migraine patients are over age 40, contradicting the idea that it only impacts young women.
- It also finds that the majority (76%) of diagnosed adult migraine patients have cardiovascular risk factors that caution against the use of triptan medications, much higher than generally believed. Having a migraine diagnosis increases the risk of future cardiovascular events.
- Current treatment patterns show triptan use is lower in high-risk patients than others, and off-label opioid use is higher, suggesting this population is underserved by existing options.
This document describes how real-world data was used to help expand a clinical trial for a rare disease. Specifically:
1. Claims data was analyzed to identify patients diagnosed with the rare disease and their physicians, applying inclusion criteria like diagnostic tests and drug treatments. This sized the national patient population and located diagnosing/treating doctors.
2. Physicians were mapped to local hospitals to identify areas with high concentrations of relevant patients and doctors.
3. A density analysis identified the top 20 hospitals that could serve as potential new clinical trial sites based on clusters of physicians and their patient counts. This innovative use of real-world data provided new insights to strengthen the company's rare disease research program.
EMR as a highly powerful European RWD sourceIMSHealthRWES
This document discusses leveraging electronic medical record (EMR) data from multiple countries in Europe to improve clinical trial design and patient recruitment for a cardiovascular drug trial. Specifically:
EMR data from France, UK, Italy, Germany and Spain was used to 1) characterize and quantify the number of potential patients meeting the inclusion criteria, and 2) identify and pre-select high-potential clinical trial sites. This approach helped clarify the definition of "statin-intolerant patients" and ensured the number of required trial sites would be sufficient. Using real-world data in this way enhanced the clinical trial strategy and avoided potential delays or additional costs associated with insufficient patient recruitment.
As pharmaceutical manufacturers look for ways to build
stronger relationships with their Integrated Delivery Network
(IDN) clients, RWE is emerging as a desired infrastructure
capability, presenting a window of opportunity to support and
collaborate on IDN efforts. If done well, these RWE-related
partnerships should provide value for both parties involved
but require pharma to expand its mindset beyond
product-specific approaches.
Building innovative, effective RWE platformsIMSHealthRWES
As more pharmaceutical companies pursue RWE as a core
capability in their organization, they have been increasing their
investment in integrated evidence platforms.
Integrate RWE into clinical developmentIMSHealthRWES
With greater application of RWE throughout the pharmaceutical
lifecycle, learnings are emerging that offer guidance for
approaches to derive the maximum value. This article captures
the author’s experience at a leading international biotech, with
insights for smoothing RWE assimilation into clinical
development and realizing the benefits it brings.
IMS Health Real-World Evidence Solutions at ISPOR November 2015IMSHealthRWES
Welcome to the IMS Health Real-World Evidence (RWE) Solutions program of activities at the forthcoming ISPOR 18th Annual European Congress in Milan. We invite you to join us at more than 70 presentations that spotlight exciting innovations and applications of outcomes research and RWE. And please visit us at our booth to learn more about our pioneering efforts including the e360TM technology suite, RWD Catalogue with 1,800+ data sources identified, and the newly launched RWE Dictionary. Full details of our ISPOR schedule can be found in the brochure.
IMS Health Enriched Real-World Data StudyIMSHealthRWES
1) Researchers developed the DIAREG registry in Germany using a mixed methods approach to overcome limitations of electronic medical record databases which often lack critical variables.
2) The registry links retrospective data from electronic medical records with prospective clinical data collected through electronic case report forms and patient-reported outcomes to create a rich data resource.
3) As of September 2014, the DIAREG registry contained data on 1,071 diabetes patients in Germany, enabling granular observational research on relationships and outcomes that were previously difficult to study.
30 – Hours Yogic Sukshma Vyayama Teacher Training Course
What is Sukshma Yoga?
Dhirendra Brahmachari formulated this system and wrote books to clearly formulate the ancient yogic science. This practice simple yet powerful series of specific exercises that improve health and enhance the strength of different organs and systems in the body, from top of head to toes.
Suksma means subtle prana, mind, and intellect: Vyayama means exercise. Suksma Vyayama is meant for the Subtle Body (Suksma Sarira), it is not meant for the Sthula Sarira (Gross Physical Body).
Need of Suksma Vyayama
In yoga, it is said that most pranic blockages start in our joints. Ayurveda says that ‘ama’ or the toxic and undigested waste material tends to settle in the empty spaces of our body, the joints. To remove these impurities we practice Suksma Vyayama, to release any such impurities in our subtle pranic body.
Three dimension of suksma Vyayama:
1.Breathing (slow or fast: Bhastrika/Bellows)
2.Point of concentration (mental concentration on Chakras)
3.Exercise (using Bandhas and Mudras)
Sukshma yoga purifies and recharges the body, mind, energy, and emotion. It prepares the well foundation for further means of Yoga practice. It includes Sukshma Vyayama (Subtle Exercise), and Vishram (Rest & Relaxation). It is itself complete package that fulfills the basic need of human being.
Sukshma Vyayama is one of the major parts for physical activity and the regulation of entire physiologies. Sukshma Vyayama is also known as a kind of warm up exercise or basic exercise or clinically anti-rheumatic group of exercise and also called body scan. The system of the physical and breathing exercise which help to sequentially work out all joints of a body, to warm it up. This system has a strong purifying effect on energy body of a human.
1.1. History of Sukshma Vyayama
We will observe visible Parampara of Sukshma Vyayama. Literal meaning of Parampara is the continuous chain of succession by Master to followers. In Parampara system, the knowledge is passed on without changes from generation to generation). Unfortunately because of the absence of enough information we are not able to find sources of this tradition.
System of Sukshma Vyayama knowledge which was unknown in the west before that was extended by one of outstanding yoga masters, Dhirendra Brahmachari (1925-1994). He received Initiation into Sukshma Vyayama techniques from Maharshi Kartikeya, the prophet and sacred great yogi who was his Master. In the preface to the book “Yogic Sukshma Vyayama” Dhirendra Brahmachari wrote about his precious Guru. Deep knowledge made him the unique expert of human characters, of their abilities and possibilities. From Maharshi Kartikeya, Dhirendra Brahmachari received a precept to spread knowledge about Sukshma Vyayama. The invaluable merit of Dhirendra Brahmachari is that he managed to accumulate knowledge in the convenient form, to make it open and understandable for the audience everywhere. The b
This presentation tells about health education for hand wash to children. Every child should know that how to keep hand clean. And maintain the good hand washing practices. Nowadays disease are easily spread through uncleaned hands.germs are habitat in their hands and then it causes different types of diseases.so, we must give the health education for hand washing to every children. And make them practice.
Revolutionize Pain Management with Almagia’s PEMF Devices Shop Now.pptxALMAGIA INTERNATIONAL
In this blog, we will dig into some scientific studies that highlight the effectiveness of Almagia’s PEMF devices for sale and how they have transformed the landscape of pain management.
Automated Feedback in Digital Depression Screening: DISCOVER Trial | The Life...The Lifesciences Magazine
A recent study published in The Lancet Digital Health delves into the effectiveness of automated feedback following internet-based depression screenings.
BLOOD DONATION ppt For medical students..pptxdarshitam0310
Mention safety measures and potential side effects. Provide tips on how to prepare for donations such as staying hydrated and eating well.This concise format covers the essential aspects of blood donation.
Online Live Personal Yoga Training at Home
Home Yoga
Change is Possible!
I am ready to help you, to improve your health, reduce stress and moving towards perfect peace, happiness and joy!
Show you the difference between intentional self-care and unintentional numbing out, so that you can be fully awake for all of your life
Restore your natural physical alignment, because it is critical to your health and well-being
Help you develop a practice of intentional surrender because it brings relief from stress and will improve every aspect of your life
Show you how to take care of yourself because that is the first step toward the connection you are craving with others
Restore your mind-body connection, because decision-making is so much easier when you can hear your own intuition
Home yoga course contents
The private yoga lesson consists of Power Yoga, Dynamic Yoga, Yoga Therapy for different ailments, Yoga for stress management, yoga posture (asana), yogic breathing (pranayama), guided meditation and relaxation. Sometimes the cleansing practices like Vamana Dhouti (vomiting), Jala & Sutra Neti (nasal cleaning), Laghu Sankhaprakshalana (intestine cleansing), vyutkarma & sheetkarma kapalabhati (nasal cleansing), Trataka (eye cleansing) and MSRT (immune system enhancement) are also included depending on the requirement of the participant
If you are looking for a secluded, silent, one-on-one yoga practice with personal care and attention and without any outside disturbances, private yoga lessons are perfect for you. In private yoga lessons, you save your time and energy from traveling to a distance yoga studio and practice yoga from the comfort of your home in a personal ambiance. In private yoga lessons, you learn properly with one-on-one attention from the yoga trainer. The yoga trainer also gets enough time to understand your requirements and customizes the yoga practices accordingly for your maximum health benefit.
If you are suffering from any specific health problems, private yoga lessons are ideal for you. Yoga therapy practices cannot be done in a group, it has to be done always one-on-one basis. Because your problem is different from others. In a group yoga class, the yoga practices are not addressed according to your body conditions & requirements, some of the practices in the group might be harmful to you. Moreover, if the group yoga trainer is not a qualified yoga therapist but only a yoga instructor, he may not know the yoga practices that are useful and harmful to you. Therefore, if you are suffering from any specific health conditions, you require private yoga lessons with one-on-one attention from an experienced yoga therapist for your recovery.
How many people can join in private yoga lessons?
We allow one or, maximum of two people at a time in a private yoga lesson.
Private yoga course contents
The private yoga lesson consists of Power Yoga, Dynamic Yoga, Yoga Therapy for different ailments, Yoga for stress management, yoga post
"NeuroActiv6: Revitalize Your Mind with Youthful Energy and Clarity"Ajay Agnihotri
In today's fast-paced world, maintaining mental clarity and energy can be challenging. The constant demands of work, family, and social commitments often leave us feeling drained and foggy. Enter NeuroActiv6, a revolutionary supplement designed to rejuvenate your mind and restore youthful energy and clarity.
NeuroActiv6 is a brain-boosting supplement that combines a unique blend of natural ingredients known for their cognitive-enhancing properties. This powerful formula is designed to support brain health, improve mental performance, and boost energy levels. Whether you're a busy professional, a student, or someone looking to enhance your cognitive function, NeuroActiv6 offers a range of benefits to help you achieve your goals.
NeuroActiv6 works by providing your brain with the essential nutrients it needs to function at its best. The combination of these powerful ingredients helps reduce brain fog, improve focus and concentration, and increase energy levels. By supporting brain health and enhancing cognitive function, NeuroActiv6 allows you to tackle your day with renewed vigor and mental clarity.
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Mudra & Pranayama Certificate Course
Online/Offline 12 Hrs – Mudra & Pranayama Certificate Course
12 hours – Mudra and Pranayama Certificate Course
What is Yoga Continuing Education Courses (YACEP)
We offer various training programs to deepen knowledge and improve teaching skills through various yoga teacher training courses. Continuing education is a post-learning, formal learning program for yoga practitioners that can have credit courses as well as non-credit courses. These courses are intended to allow an individual to extend their insight and develop their abilities in a particular field. Numerous callings even expect individuals to take up Continuing Education to have the option to recharge their permit and seek after their training.
Continuing education in yoga mainly serves two purposes
To deepen your existing knowledge and skills.
To teach you new skills and techniques related to teaching yoga.
Yoga Alliance Registered Continuing Education Provider, Courses Open to Everyone.
This course is eligible for Continued Education (CE) credits with Yoga Alliance. It is accredited by Yoga Alliance and it can be used as a continuing education course (YACEP) for Register Yoga Teachers with Yoga Alliance
Deepen your practice and your knowledge
Are you are yoga professional or a curious practitioner and wish to deepen your yoga knowledge and techniques? Then a continuing education course may be something for you! You will learn selected specialized yoga topics that will allow you to expand your horizons when it comes to your personal practice or that of your students. With the knowledge you will acquire, you will gain a deeper understanding of the functioning of anatomical and energetic body layers, and develop a more complete insight into yoga.
International Certification
Upon successful completion of the course, you will receive a certificate of completion of the Mudra and Pranayama Certificate Course, which you can count towards your continuing education. Our yoga teacher training courses are accredited by Yoga Alliance USA.
About the course facilitator
Dr. S. Karuna Murthy, M.Sc., Ph.D., E-RYT 500, YACEP
Dr. S. Karuna Murthy is one of the most experienced Yogi practicing the ancient and the greatest Yoga tradition since he was 18 years of age. Following in the footsteps of his inspiration Swami Sivananda who was also the founder of Divine Life Society, has mastered the ancient Yoga traditions that only a few in this world are familiar with.
He completed M. Sc from Swami Vivekananda Yoga Anusandhana Samasthana University and Ph. D from Bharathidasan University. Besides, Dr. S. Karuna Murthy has also completed TTC and ATTC and is registered E-RYT-500 with American Yoga Alliance. Those qualifications depict his expertise in the context of Yoga and mastering Yoga Teaching methodology.
With the immense interest to serve the people with the ancient Yoga techniques, he also served as a Yoga therapist at S-VYASA, Bangalore. He has also served as a Yoga
50 Hr – Restorative Yoga Teacher Training Certificate Course
50 Hr – Restorative Yoga Teacher Training Course
Course Fee: INR 15,000 for Indian citizens only, for foreigners USD 350.
Yoga Manual (01)
Certificate
Excluded with accommodation and food
Upcoming Batches 50 Hr Non-Residential (Week-Days/Week-End)
Professional Yoga Teacher Training
Our 50 hours Restorative Yoga Teachers Training Course is beautifully programmed for those enthusiasts who desire to have a professional certificate in the future but can’t afford the time of two months in one slot.
If you have less time or you want to learn slowly, so 50-hour yoga teacher training course in Bangalore can be the perfect yoga course for you, karuna yoga offers a self-paced yoga teacher training course in Bangalore India, and you can join the other half in 1 year of time to complete 200/300 hours Teacher Training Course.
In order to obtain a professional certificate of 200/300 Hour, Teachers Training Course affiliated with the Yoga alliance one has to complete 200 Hours which is usually completed in one or two months of time, we designed this course in such a way that if any participant wants to first get introduced with the way and process of professional yoga teacher training course and have only short time then students can enroll for this yoga course.
Our 50 hours Yoga Teacher Training Course program runs along with our regular student of 200/300-hour Teacher Training Course students in the first phase, upon completion of the course if a student wants to finish remaining their balance of 150/250 hours of Teacher Training Course in the future, then students can continue the course of the second stage of Teacher Training Course to obtain 200/300-hour Teacher Training Course certificate affiliated with Yoga Alliance in order to have a professional certificate.
Our 50 hours can be accepted as continuing education from Yoga Alliance if in the future you want to continue the training from our center. Please make a note while completing 50 hour TTC you will be only provided with a certificate issued by our organization and the certificate will not be affiliated with Yoga Alliance, and only after completion of the second stage of balance 150/250 hours of TTC, which technically becomes 200/300 hours in total of training, we will issue the certificate of 200/300-hour Teacher Training Course.
Karuna Yoga Vidya Peetham is a Registered Yoga teacher training school in Bangalore, India with an affiliation of Yoga Alliance, USA which offers 50 Hour Yoga Teacher Training in Bangalore, India. If you look forward to the course then this is the best choice.
International Certification
Upon successful completion of the course, you will receive a certificate of completion of the 20 hour Hatha Yoga course, that you can count towards your continuing education. Our yoga teacher training courses are accredited by Yoga Alliance USA.
Pre-requisites:
This course is open to all students who wish to deepen their
50 Hr – Restorative Yoga Teacher Training Certificate Course.ppt
Advocacy and the cancer patient viewpoint
1. PAGE 62 IMS HEALTH REAL-WORLD EVIDENCE SOLUTIONS
INSIGHTS PARTNERING IN RWE
Advocacy and the cancer
patient viewpoint
Patient advocacy groups have long played a critical role in
improving the lives of cancer patients by raising awareness and
providing valuable tools and services. However, as they
increasingly seek to influence the focus of oncology research, the
design of clinical trials and the generation of RWD, their role is
evolving. In the era of patient-centricity, pharma must understand
how best to partner with these groups to generate, access and
leverage RWe that can be used to improve patient lives.
Hammit mistry, PHD
Principal, RWE Solutions, IMS Health
Hmistry@uk.imshealth.com
2. oncology advocates: evolving areas of interest
The traditional goals of patient advocates in oncology has
been to raise awareness, educate patients and support those
impacted by cancer. Many of the most prominent advocacy
groups have also invested in healthcare advancement and
policy shaping. Collectively, these advocates have an
impressive history of success which has seen them evolve
into crucial stakeholders for pharma and healthcare
decision makers.
The evolution of oncology advocacy has also been driven by
greater professionalism, more accessible information and
advancements in technology that drives connectivity. At the
same time, the mindset of donors is changing, with greater
expectations for social return on investment for their charitable
contributions.1
And finally, the ever-growing focus on
patient-centricity increases the importance of including
patient input at each stage of their journey. Clinicians,
regulators and pharmaceutical companies now regularly
work alongside oncology advocates to better serve patient
needs, supporting broader collaborations than typically
seen in the past.
While these changes are not limited to the oncology space,
the life altering impact of a cancer diagnosis and lack of
effective treatments in some tumor types are drivers for
Advocacy engagement and RWD
EvolvingTraditional
Disease awareness
and patient/caregiver
education
Shaping scientific
research to accelerate
care improvement
Patient and
caregiver support
Online community
moderation and access
Building clinical
trial awareness
Clinical trial design
and patient recruitment
Campaigning for
access to medicines
Generating datasets
and evidence through
patient registries
Providing the
patient viewpoint to
healthcare stakeholders
Powerful thought
leadership
Fundraising Broader commercial
outlook
continued on next page
Figure 1: The changing focus of patient advocacy
in oncology
ACCESSPOINT • VOLUME 6 • ISSUE 12 PAGE 63
The era of patient-centricity
In recent years, pharma has taken a more holistic view
of its role in improving patient care. The days of simply
manufacturing and marketing a drug have been
replaced by a patient-centric focus with emphasis on
providing holistic support. This stems from a more
complete understanding of how a disease impacts
patients and their caregivers, fully appreciating their
unmet needs and what they value, even if it cannot be
met by drug intervention. Companies are increasingly
keen to deliver innovative solutions (drug + service
combinations) and personalized care that improves
patient outcomes at a cost which is acceptable to
regulators and decision makers. The belief is that truly
impactful solutions will be valued by patients, clinicians
and payers, as well as benefiting the companies that
offer them.
increased patient input. For other tumors, advancements in
targeted therapies and improved cancer survivorship are
important catalysts. Overall, cancer patients want to be
more involved in the treatment and management of their
disease, and share their experiences. They seek better
information, hand pick clinicians and centers based on
reputation, and connect with communities to tell their story.
So what does this mean for today’s oncology advocacy groups?
The RWe intersect
As shown in Figure 1, many of the more progressive oncology
advocacy groups are shifting focus to serve their members in
broader ways. As they do so, they enter a domain where
pharma companies, academics, researchers and economists
are increasingly active: RWD and RWE. Access to first-hand,
anonymized patient medical records, genomics data and
self-reported outcomes allows these groups to drive RWD
collection, influence RWE generation and develop credible
viewpoints that shape the way cancer is managed. This is
apparent in four key areas
1. Actively influencing clinical trial design and driving
trial recruitment
Particularly in oncology, there is a growing advocacy
movement built on concerns that firstly, patients are
treated as guinea pigs in today’s clinical trial processes;
and secondly, that many trials do not offer benefit to the
patients involved.2
Examples include trials of drugs that
offer limited potential improvement over standard of
care or blinded studies where only some patients receive
the newer, potentially more effective treatments – a
common problem in rare cancers where current
treatments are unsatisfactory.
3. PAGE 64 IMS HEALTH REAL-WORLD EVIDENCE SOLUTIONS
INSIGHTS PARTNERING IN RWE
Patient advocates are therefore seeking opportunities to
provide earlier input to study protocol design, shaping
trial endpoints to reflect what really matters to patients
and caregivers. The outcome is that better designed trials
which show benefit to the entire study cohort are more
relevant for patients and this in turn facilitates
recruitment. The challenge for clinicians and pharma is
to ensure that patient demands are realistic and within
the boundaries of modern science. One way to manage
quality control is to work collaboratively with patients to
gather, evaluate and prioritize research questions that
are truly meaningful for them (Figure 2).
2. Moderating online communities and managing access
to patient networks
A number of technology providers have built intelligent
platforms to host patient communities, often partnering
with patient advocacy groups to manage content,
improve the quality of information and drive valuable
dialogue amongst forum members. Two such providers,
HealthUnlocked and Inspire, follow a similar model,
inviting a well respected advocacy group to moderate
content for their specific disease area (Figure 3).
The primary aim of these forums is to provide
information, education and social support to members.
However, the significance of an easily reachable patient
community is not lost on researchers and pharma, who
see great value in patient surveys, PROs and the
possibility to accelerate clinical trial recruitment.
Importantly, the advocacy group moderators play a key
role in managing access to their communities, ensuring
that any requests or push-messages are in the best
interests of patients. These communities have seen
massive growth in the last five years and with this trend
likely to continue, the volume and richness of self-
reported RWD available will also increase further.
3. Establishing prominent thought leaders who shape
healthcare priorities
The call for patient input into healthcare policy and
regulatory decision making is loud and getting louder.
Figure 2: Examples of patient advocacy influencing trial design and recruitment 3–6
Figure 3: Example of a patient advocate moderating
online patient communities 7
Clinical Trial Priority Setting
• The James Lind Alliance established a partnership with carers,
clinicians and patient advocates (including The Brain Tumour
Charity, brainstrust, Brain Tumour Research, Children with
Cancer UK) to identify and prioritize clinical questions for
brain and spinal cord tumors
• 600+ potential research questions were gathered from ~200
patients and carers with the support of advocacy groups;
these were prioritized through a series of consultations
• 10 clinical research priorities were agreed that truly reflect
patient needs and quality of life (QoL)
The National Institute for Health Research and Cancer Research
UK are actively seeking researchers to initiate these studies, which
will eventually provide benchmark endpoints for drug research
and QoL measures
Trial Expansion & Recruitment
• Chordoma is a very rare form of bone cancer (1 in every million
people) with no current drug treatments, but mutation of the
brachyury protein is a known risk factor
• Chordoma Foundation (CF) invited a biopharmaceutical company
GlobeImmune to present on an investigational immunotherapy
agent that targets the brachyury protein in other cancers
• GlobeImmune decided to broaden its Phase 1 trial and
partnered with CF to successfully recruit chordoma patients
via the CF community within just a few weeks•
Moderated Discussion & Research
• The UK-based CLLSA set up an online community using the
HealthUnlocked platform with two moderators and more than
3,000 registered members
• Moderators can easily host surveys, collect input on key topics
and contact/screen members for clinical trial eligibility
• New platform features allow for closed groups that, for example,
collect PROs as part of a clinical trial, which can be de-identified
and linked to EMRs
4. ACCESSPOINT • VOLUME 6 • ISSUE 12 PAGE 65
continued on next page
Bettina Ryll
• Bettina Ryll is a patient advocate, founding member of the
Melanoma Patient Network EU (MPNE), and chair of the
European Society for Medical Oncology (ESMO) patient advocacy
working group
• A qualified doctor, she took up the cause for melanoma
patients when her husband was diagnosed with
advanced melanoma
• She has key interests in patient-focused clinical trials
and access to novel therapies
• MPNE has developed a melanoma risk-benefit tool with
melanoma patient input
Myeloma Patients Europe
• MPE published a European Atlas of barriers and access to
myeloma treatments across 30 European countries to compare
variability in patient care
• They also collected input from patients and payers to
compare outlooks
• An action plan was then developed to support national advocacy
groups
• KOLs now use study results as a platform to improve patient options
Figure 4: Examples of advocacy involvement in generating patient-focused RWE 9–11
The FDA, EMA and NICE issue guidance on many topics
recommending patient input to decision making – a role
that leading oncology patient advocacy groups often
assume.8
It is becoming increasingly common to see
prominent patient advocates addressing medical and
policy congresses and taking up a seat on their
governance committees/boards.
The desire to listen has allowed many to broach topics
such as access to medicines, funding for research and
drug risk/benefit evaluations. This has led to their
involvement in generating powerful evidence from
reliable RWD sources that expresses the patient point of
view (Figure 4). Partnering with academics and
regulators to design, conduct and publish evidence-based
research is a trend that is likely to continue.
Some may argue that the evolving patient advocate
agenda takes them away from their traditional focus.
Politically active groups often hold a larger share of
voice, enjoy greater publicity and capture a greater
portion of donations versus their more socially conscious
counterparts. Does this detract from the core philosophy
of patient support and wellbeing? There is certainly room
for both types of oncology patient advocate but finding a
way to work in harmony and place patient interests at
the forefront of activities is vital to ensure positive
advocacy impact.
4. Building rich patient datasets that drive advancement
in scientific research
Stratifying patients by genetic mutation, biomarkers and
histology is becoming more mainstream in cancer, fueling
the momentum to develop targeted therapies and
immunotherapies. A precursor to these clinical efforts is
enabling the collection and dissemination of rich,
anonymous patient-level data which can be interrogated
by data scientists. For some of the main cancer types,
clinicians and scientists (often sponsored by pharma)
have successfully established registries that have
supported the development and launch of targeted
therapies. This is not an easy task in any disease area but
is especially challenging in rare or niche cancers given the
low incidence, lack of physician experts and geographic
spread of patients. It is here where many cancer patient
advocacy groups are becoming more active, acting as a
central body to collect and share clinical, genomic and
PRO data.12
The value of this is already being recognized by
• The clinical community, given the complex nature of
rare cancers and the lack of published research, common
endpoints and stratification tools. Registries can provide
insight into baseline patient care pathways, which can
act as comparative endpoints in trial design and remove
the need for control groups. They also serve to support
post-marketing authorization evidence generation,
particularly in rarer cancers or niche patient subsets
where drugs may reach the market with relatively few
patients included in trials.
• Regulators, who increasingly expect robust data on
patient populations and subgroups. The FDA, for
example, recently issued guidance urging manufacturers
to compile more comprehensive natural histories of rare
disease populations.13
The objective was to understand
disease manifestations, patient subtypes and clinical
markers and to observe the complete disease journey.
5. PAGE 66 IMS HEALTH REAL-WORLD EVIDENCE SOLUTIONS
INSIGHTS PARTNERING IN RWE
As advocacy groups connect disease communities and
collate increasingly more sophisticated patient data
(Figure 5), there are clear reasons for pharma to support
registry building and incorporate related intelligence
within their drug submissions.
In most cases, oncology advocates collaborate with
interested KOLs and clinicians to build registries,
ensuring they hold robust clinical information to sit
alongside any personal history provided by the patients.
Without such rigor there is a danger that registries lack
the structure, completeness and accuracy to be of value
to the scientific community. As yet, there is no common
standard for registry design, structure or management,
making it harder for researchers when exploring
potential sources and evaluating data robustness.
Partnerships: The way forward
As pharma continues to embrace the value of partnering
with advocacy groups, there are emerging challenges that
must be carefully navigated, particularly in relation to RWD
and evidence generation. Most companies already profile
and segment these groups to identify those with shared
goals, solid reputations and collaborative attitudes to
working with clinical and industry partners. However, there
are some common areas of misalignment and related good
practices that they should keep in mind.
• Striking a balance around RWD IP and ownership
While pharma may see patient data as an asset with
commercial value or IP that provides competitive
advantage, advocacy groups take the opposite view.
Believing that knowledge drives advancement, many feel
this anonymized data should be shared in the public (or
at least scientific) domain to accelerate real-world
understanding and R&D productivity.13,18
Striking a balance is critical to any partnership. One option is
to drive towards hybrid registries where the bulk of data
remains in the public domain but certain measures or data
points are reserved for sponsoring companies.
• Safeguarding advocacy independence
Part of the power of advocacy groups lies in their
independence. As companies seek out areas for
collaboration they must be careful to maintain their own
patient-centric reputation without damaging the
integrity of advocacy partners.
Typical good practice today is to work with a network of
partners (other pharma industry sponsors, KOLs,
academics/researchers, multiple advocacy groups) who share a
common goal. Here, with the resources, capabilities and
know-how to operate across all stakeholder groups, pharma
typically plays a key role in managing agreements, RFPs and
working with regulators to get projects off the ground.15
Registry
• The Pancreatic Cancer Action Network
(PCAN) is seeking patients to join its
registry and “know your tumor” program
• Joiners are asked to transcribe their
medical records into the online system
and are offered complete control in
terms of how that information is shared
• PCAN staff identify patients eligible to
donate tissue samples for genomic
profiling and gauge their interest
• Scientists submit study proposals to
access the database; the focus for
PCAN is to learn more about mutations
related to pancreatic cancer and its
potential therapies
Registry & Biobank
• The MMRF is building CoMMpass,
the richest clinical and genomic
dataset on multiple myeloma patients
anywhere; they recently enrolled their
1,000th patient
• The dataset will include a longitudinal
collection of bone marrow and blood
samples, clinical data, treatments and
responses, and QoL alongside extensive
molecular profiling
• They are also establishing a broader
patient registry to enable further
understanding of patient profiles,
clinical trends and unmet needs
Scientific Advancement
• MMRF has also built a ‘researcher
gateway’ to provide scientists and
clinicians with access to the rich
CoMMpass dataset and a ‘research
consortium’ to encourage collaboration
• The overarching aim is to accelerate
discovery of new targets, pathways and
biomarkers that will help to personalize
therapies for myeloma patients
Figure 5: Examples of advocacy involvement in building rich RWD datasets 14–17
“
”
The richness of cancer RWD being generated and accessed with advocacy
support demands more open collaborative work to ultimately improve clinical
and experience outcomes
“
6. ACCESSPOINT • VOLUME 6 • ISSUE 12 PAGE 67
• Ensuring trial endpoints of value to patients
With the trend for stronger capture of patient
perspectives during trial design, the likelihood of
misalignment between clinical and quality of life (QoL)
endpoints is very real.2,8
While clinically proving extension of life may be very
meaningful for manufacturers, patients may place more
emphasis on being able to carry out daily activities or
avoid side-effects that impact their routine. A further
challenge for pharma is if patients see a trial as being
not “fair”, for example if a particular cohort misses out
on a high-potential investigational drug in order to
provide a control arm.2
Some general principles for pharma are to seek advocate input
early in the trial design, test potential endpoints with a cross-
section of patients and generate a patient-centric mix of
clinical and QoL measures to prove effectiveness. Patient
advocates can be a great sounding board for getting trials right.
• Addressing data quality/completeness issues
On the surface, patient registries and patient-reported
information sources may seem the perfect solution to
understanding a disease, especially when they report on
the number of patients involved/captured in data
collection. In reality, data quality and completeness are
highly variable, even when physicians are inputting data
into medical records. Missing data fields, incomplete
patient histories and lack of real outcomes data are
hugely detrimental for analysis. However, for advocacy
groups this may be superfluous versus covering a large
number of patient lives.
To help evaluate, cleanse and navigate the data chaos, it is worth
employing data scientists and research partners with experience
in these data types who can work closely with data owners to
identify solutions and help improve future data feeds.
• Being transparent on commercial interests
In general, pharma/advocate partnerships run fairly
smoothly. However, there are three areas where views
are likely to differ
1. Price of oncology drugs. This can be a major area of
disagreement, even if both parties share the goal of
improving patient access to new medicines. One
potential route is to lower drug prices which could
obviously cause conflicts in the relationship.
2. Fair weather partners. There is an impression that
pharma is happy to partner with and sponsor advocate
activity while drugs are making money, but that these
activities are the first to be cut if financials worsen or
drugs are at the end of patent exclusivity.
3. Survivorship care. This is a growing area of concern
for cancer advocacy groups and healthcare funders
given the improving life expectancy of many cancer
patients. The perception is that pharma will support
patients while on their drug but forsake longer-term
survivors who may need support as part of their
lifestyle and continue to drive healthcare resource
utilization.
Finding ways to partner with advocacy groups without
jeopardizing the corporate position is an area for
improvement. One tried and tested approach is building trust
through transparency and authenticity; being honest about
where interests align with advocacy groups, where they
potentially misalign and what it is reasonable to expect from
an industry partner.
Conclusion
A new paradigm is emerging where oncology advocacy
groups with strong patient backing and fundraising
capabilities are poised to transform into organizations that
sponsor drug research, engage pharma partners as peers
and take control of RWD collection and evidence generation.
For pharma, this creates a need to better understand how
oncology patient advocacy is evolving and how best to
partner with groups on mutually beneficial projects.
Organizationally, changes are already underway with
“patient” roles becoming more common in the C-Suite and
patient input being gathered more routinely at key decision
points in the cancer drug lifecycle. However, more can be
done to embed good ways of working across the industry
and to support oncology advocates in their game-changing
activities. The richness of cancer RWD being generated and
accessed with advocacy support demands more open
collaborative work with these groups to ultimately improve
clinical and experience outcomes.
continued on next page
“
”
For pharma, this creates a need to better understand how oncology patient
advocacy is evolving and how best to partner with groups on mutually
beneficial projects
“
7. PAGE 68 IMS HEALTH REAL-WORLD EVIDENCE SOLUTIONS
INSIGHTS PARTNERING IN RWE
References
1
Return on Donations, A white paper on Charity Impact Measurement,
Lukas O Berg and Charlotte Månsson, 2011.
http://www.charitystar.org/wp-content/uploads/2011/05/Return_on
_donations_a_white_paper_on_charity_impact_measurement.pdf
2
Welcome to the revolution! The changing role of patient advocates
within research, Anna Wagstaff, 2015.
http://www.cancerworld.org/Articles/Issues/66/May-June-
2015/Patient-Voice/718/Welcome-to-the-revolution-The-changing-
role-of-patient-advocates-within-research.html
3
Welcome to the NCRI Clinical Studies Groups. http://csg.ncri.org.uk/
4
UK patients and healthcare professionals work together to put brain and
spinal cord tumours at the top of the clinical research agenda, Laura
Macdonald on behalf of the JLA Neuro-Oncology Group; International
Brain Tumour Alliance; World Edition 2015; 16: 41-43.
https://issuu.com/ibta-org/docs/ibta-2015
5
Chordoma Foundation. http://www.chordomafoundation.org/
6
The Man Working to Cure His Own Cancer, Aimee Swartz, 2015
http://www.theatlantic.com/health/archive/2014/03/the-man-
working-to-cure-his-own-cancer/284091/
7
CLL Support Association site on Health Unlocked.
https://healthunlocked.com/cllsupport
8
ESMO Workshop Cancer Patient Advocate Networks Driving Research,
2016. http://oncologypro.esmo.org/Meeting-Resources/ESMO-Patient-
Advocate-Workshop
9
The risk of NOT taking risks in Melanoma, Melanoma Patient Network
Europe, Bettina Ryll & Kristin Bryon. http://www.melanomapatientnetworkeu.org
/press-release-mpne-2015.html
10
European Atlas of Access to Myeloma Treatment: a new approach to
advocacy; Ananda Plate.
http://oncologypro.esmo.org/content/download/76233/1395454/file/201
6-Patient-Advocate-Workshop-PLATE.pdf
11
European Atlas on Access to Myeloma Treatment, Myeloma Patient
Europe. http://fadq.net/myeloma/map/
12
Advocacy Groups Raise Cancer Patient Awareness of Genomic Profiling,
Help Manage Testing Complexity, Turna Ray, 2015.
https://www.genomeweb.com/sequencing-technology/advocacy-
groups-raise-cancer-patient-awareness-genomic-profiling-help-
manage
13
Sharing the Mission to Conquer Rare Diseases; Heather Gartman;
inVentiv Health http://www.rarescience.org/wp-
content/uploads/2016/02/Sharing-the-Mission-to-Conquer-Rare-
Diseases.pdf
14
Welcome to the Pancreatic Cancer Action Network’s Patient Registry.
https://www.pancan.org/section-facing-pancreatic-cancer/patient-
registry/
15
MMRF ANNUAL REPORT 2014, Walter Capone President and CEO
Multiple Myeloma Research Foundation. http://www.themmrf.org/wp-
content/uploads/MMRF_D_Annual-Report-2014_FINAL.pdf
16
About MMRF. http://www.themmrf.org/about-mmrf
17
The MMRF CoMMpass study. http://www.themmrf.org/research-
partners/mmrf-data-bank/commpass-study/
18
RARECast: Tensions Brew Between Pharma and Patient Advocacy
Groups, Heather Gartman. https://globalgenes.org/raredaily/rarecast-
tensions-brew-between-pharma-and-patient-advocacy-groups/
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