Elevating the Patient Voice in Health Economic Assessments Initiative
Kathleen Arntsen
President & CEO of Lupus and Allied Diseases Association, Inc., National Autoimmune Patient Advocate and Advocacy Community Leader
As President & CEO of Lupus and Allied Diseases Association, Inc. I am excited to share the results of our groundbreaking survey of U.S. based patient advocacy organizations to gauge their knowledge and experience concerning participation in Health Economic Assessments (HEAs) and the types of resources or support they might need to consider participating in future HEAs.
The survey was distributed to a diverse group of patient advocacy stakeholders throughout the United States ranging from large national umbrella and chronic disease foundations to small grassroots rare disease advocacy organizations. The key findings from this survey illuminate the importance of including the patient voice in the HEA process while revealing that there is willingness among patient advocacy organizations to become engaged and identifying areas of opportunity to better prepare groups to be important participants in the HEA process.
Key findings:
73% of patient advocacy organizations included actual patient and caregiver stakeholders in their HEA processes.
46% of patient advocacy organizations who participated in HEAs indicated that their view of the final result of the assessment was neither positive nor negative for their community.
64% of patient advocacy organizations who participated in HEAs and had a positive experience indicated that their community did not benefit from the assessment by gaining access to the new treatment.
63% of patient advocacy organizations that participated in HEAs responded that despite the outcome of the assessment, the overall participation experience was positive, demonstrating that they are open to being engaged and sharing their community perspectives.
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69% of patient advocacy groups that did not participate in HEAs indicated that they had not been asked to participate.
72% of patient advocacy groups that did not participate in HEAs, indicated that they would engage if they understood how to effectively participate through educational forums, had adequate resources, and were able to connect with organizations who had participated in HEAs.
The results of this cutting-edge survey yields significant learnings for the broader advocacy and value assessment community while underlining potential opportunities for further investigation. To learn more and read the report CLICK HERE
We would like to recognize and thank the various stakeholders who helped to make this pioneering initiative possible. We extend sincere appreciation to the individuals, patient and healthcare provider organizations, coalitions, research entities, pharmaceutical companies and other entities that helped to share and promote the survey, and, above all, the many patient advocacy organizations who took the time to participate in this brief survey. We gratefully acknowledge our sponsors for their generous support in providing funding for this initiative, and Kathleen Arntsen , Dave Arntsen , and Bradley Dickerson from the LADA Team for their contributions and sole management of the project.
Founded in 1978, Lupus and Allied Diseases Association, Inc. is a national all-volunteer organization led by people with lupus and their loved ones that is dedicated to improving access to care and quality of life for people with lupus and allied diseases by wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and research initiatives and ensuring that the patient perspective is included and recognized as an equal stakeholder in the healthcare, regulatory and public policy arenas and across the research continuum.
Lisabeth Iglesias Sandi Frear Anne Zablotowicz Brian Vogel Nicole Hemmenway Brian Nyquist, MPH Melodie Narain-Blackwell Tiffany Westrich-Robertson Deb Majcher Constien Laura Simpson, MBA Amanda Greene Katherine Hammitt Jeffrey Anders Stephen Marmaras Matt Harutunian Jessica Bateman Dina Thachet, CCLS Jasmine Thomas Amanda Greene Infusion Access Foundation US Pain Foundation AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) Color of Gastrointestinal Illnesses, Inc. (COGI - Co-Gee) National Infusion Center Association (NICA) Autoimmune Association Aimed Alliance Patients Rising EveryLife Foundation for Rare Diseases Global Liver Institute Global Genes Looms for Lupus, Inc. National Psoriasis Foundation More Than Lupus Lupus Colorado LUPUS FOUNDATION OF NEW ENGLAND, INC. Lupus Research Alliance Lupus Foundation of America, Inc. National Bleeding Disorders Foundation Arthritis Foundation National Health Council Institute for Clinical and Economic Review (ICER) Annie Kennedy National Scleroderma Foundation National Eczema Association LUNGevity Foundation Sick Cells Pulmonary Fibrosis Foundation Chronic Care Policy Alliance (CCPA) Black Women's Health Imperative CURE Epilepsy Crohn's & Colitis Foundation Alliance for Patient Access AllStripes (now PicnicHealth) American Kidney Fund American Diabetes Association Amyloidosis Research Consortium (ARC) Beyond Celiac Cancer Support Community CARRIES TOUCH INCORPORATED COPD Foundation Dravet Syndrome Foundation Emily's Entourage Generation Patient Genetic Alliance Global Colon Cancer Association Global Healthy Living Foundation IBDMoms Spondylitis Association of America Fibromyalgia National Health Organization SNYDER-ROBINSON FOUNDATION TSC Alliance Vasculitis Foundation Tigerlily Foundation SHARE AND CARE COCKAYNE SYNDROME NETWORK INC Obesity Action Coalition National MS Society Myasthenia Gravis Foundation of America, Inc. Muscular Dystrophy Association Myasthenia Gravis Association National Kidney Foundation Lupus Foundation of Northern California New York State Bleeding Disorders Coalition Solve ME/CFS Initiative Texas Rare Alliance The AIDS Institute Touch, The Black Breast Cancer Alliance TRANSPLANT SUPPORT ORGANIZATION INC International Pemphigus Pemphigoid Foundation Juvenile Diabetes Research Foundation (JDRF) International Pain Foundation (iPain) Immune Deficiency Foundation ICAN CURE Epilepsy Diabetes Patient Advocacy Coalition Connecting to Cure Crohn's and Colitis Caregiver Action Network Child Neurology Foundation Community Liver Alliance CancerCare Michigan Lupus Foundation Lennox-Gastaut Syndrome (LGS) Foundation Alzheimer's Association® Alzheimer's Society Huntington's Disease Society of America (HDSA) LYME DISEASE ASSOCIATION INC National Tay-Sachs & Allied Diseases Association Cure & Action for Tay-Sachs (CATS) Foundation American Thyroid Association, Inc. (ATA) Blind Persons Association American Foundation for the Blind Graves' Disease & Thyroid Foundation Macular Degeneration Foundation Cooley's Anemia Foundation American Behcets Disease Assn Narcolepsy Network American Sleep Apnea Association NATIONAL NIEMANN-PICK DISEASE FOUNDATION American Sleep Apnea Association American Heart Association American Lung Association California Chronic Care Coalition Alliance for Aging Research American College of Rheumatology American Academy of Dermatology The Lupus Initiative Rheumatology Nurses Society Masonic Medical Research Institute - MMRI Childhood Arthritis and Rheumatology Research Alliance (CARRA) Rheumatology Research Foundation National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) CISCRP Patient-Centered Outcomes Research Institute (PCORI) PIPC FasterCures Society for Women's Health Research (SWHR) National Minority Quality Forum All of Us National Organization for Rare Disorders Biotechnology Innovation Organization NewYorkBIO The Janssen Pharmaceutical Companies of Johnson & Johnson PhRMA Amgen Aurinia Pharmaceuticals Inc. UCB Takeda GSK AbbVie Bristol Myers Squibb DxTerity Eli Lilly and Company Pfizer Novartis Equillium, Inc. Kezar Life Sciences Mallinckrodt Pharmaceuticals Genentech Kira Pharmaceuticals RemeGen Biosciences AstraZeneca Biogen BioNJ Boehringer Ingelheim EMD Serono, Inc. Horizon Idorsia Pharmaceuticals Ltd Sanofi Amicus Therapeutics AdvaMed Vera Therapeutics, Inc. MedTech Cephalon Exagen Inc. BioMarin Pharmaceutical Inc. Alexion Pharmaceuticals, Inc.
Head of Healthcare System Strategy at UCB
2yYou continue to amaze me.
Thank you for doing this important work!
Healthcare Advocacy, Policy & Professional Relations | Rare Disease, Rheumatology, Urology, Oncology, & Nephrology
2yCongratulations on executing this meaningful patient initiative. Well done and very comprehensive!
Disabled Advocate at Lupus Foundation of America, Inc.
2yThank you so much Kathleen for your support💕
We are thrilled to share the results of this patient-focused initiative and its report and hope to demystify the HEA process for patient advocacy organizations.