COPD360social MenuToggle Dropdown Community Activity Feed Questions and Answers Community Events COPD Digest / Blog Community Exchange How to Participate FAQ Video Tutorials How do I win points? How do I win badges? Community Guidelines Statement of Rights and Responsibilities
What Should Be Included? Return to previous page 10/24/2019 2171 Views 12 Answers Last Activity: 2 years ago, Caroline West Virginia State Captain Tags: COPD patient centered PCORI personalized medicine Question: 0 Caroline West Virginia State Captain 2 years ago I Care Report Comment Unlike I Care Report Comment Add an Answer Answers: Edit Remove Accept Unaccept Unlike I Care Report Comment Add an Answer Save Cancel What Should Be Included? Caroline West Virginia State Captain 2 years ago Add an Answer Answers Answer View More Save Cancel Tags: Subscribe: Subscribe: Your question has been submitted and is awaiting moderation. It is low-quality It is spam It does not belong here Other (enter below) Thank you for reporting this content, moderators have been notified of your submission. Close Anonymous Unfriend Friend Requested Friend Load More Close Destination Page Area Group Destination Content Title Title Article Type Copy comments I represent the COPD Foundation as a patient advocate for the Personalized Medicine Initiative. I would like your feedback on the principles that we have proposed. Patient-Centered Principles for a Personalized Medicine Research Agenda Draft Principles Patient/caregiver values includes personal priorities, religious/spiritual values, societal and cultural values (including family involvement in care decisions), views around quality of life, privacy concerns, and beliefs about health and personal responsibility. Patient/caregiver circumstancesinclude emotional state, socio-economic situation, race/ethnicity, language, ability to work, access to care, social support, cognitive abilities, attitude toward illness, personality, symptom burden, health-related quality of life, ability to consent and choose, relationship with the healthcare provider, the role of patient as a caretaker, preferences of family members, other social determinants of health, and other expressed needs or barriers. The research agenda would be most helpful if it focused on priorities that help providers in (a) identifying and communicating treatment options based on biological differences in the context of patient/caregiver values and (b) understanding patient/caregiver circumstancesand presenting treatment options in ways that highlight how a treatment aligns/does not align with those circumstances. The research agenda should address the education of patients directly by considering (a) the education of patients as a process over time, (b) how both patients and their providers can improve communication with each other, and (c) how to close the gap between patient expectations and the reality of how/when results and treatment options are delivered. The agenda should consider how to use oncology as a prototype for patient and provider education in disease areas beyond oncology. Access challenges beyond those created by a lack of communication and education should also be considered. This includes timely access to novel therapies as a result of affordability, insurance coverage and provider availability. The research agenda should be holistic by identifying research topics inclusive of diverse patient needs, disease, backgrounds, and experiences, including patients under-represented in medical research. Specifically, the research agenda should apply across disease areas. How can the research agenda apply to additional disease areas as new personalized medicine treatments come to market? The research agenda should account for the management of comorbidities. The advisory committee should consider areas the agenda must include and exclude to have the greatest impact.
COPD360social MenuToggle Dropdown Community Activity Feed Questions and Answers Community Events COPD Digest / Blog Community Exchange How to Participate FAQ Video Tutorials How do I win points? How do I win badges? Community Guidelines Statement of Rights and Responsibilities
Join Us on COPD360social Join the Conversation Become a Member > Already a Member? Sign In to Participate >
Related Content Diagnosed with COPD stage 4 & Asthma Interest findings in my spirometry results Magical mackerel Under-diagnosed COPD? Asthma From a Patient’s Perspective: The Cough That Wouldn’t Quit. How many liters of Oxygen when exercising? Check in— What is Asthma-COPD Overlap Syndrome? Bronchiectasis and COPD – What is the connection?? Quitting Smoking…..How do I feel. Scary COPD Mornings New Mild Epoc Diagnosis CT scan? I was diagnosed with moderate copd on the basis of a breathing test last summer. Inhaler and peak flow questions What is happening is this copd COPD and Lung Cancer
Medical Advice It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
COPD360social posts are monitored by Vice President of Patient Experience and COPD360social Community Manager, Bill Clark, as well as staff Respiratory Therapists.