What is PARTNERS?
PARTNERS formally links childhood arthritis, myositis and lupus patients, family members, the CARRA network, the Lupus Foundation of America, the Cure JM Foundation, the Arthritis Foundation and a quality improvement network called PR-COIN. Our vision is to improve the lives of children with rheumatic diseases through research that matters to YOU. PARTNERS is a patient-powered research network (PPRN) funded by PCORI.
Many patients do not understand what it means to participate in research. Answering a survey on how you feel or what is important to you is an example of participating in research. Other examples include sharing your health care data in an identity-protected way, suggesting research topics, helping to design studies, and helping to raise awareness of studies and their results. There are many ways to participate in research and the most important aspect is that your voice is heard!
How will PCORnet improve the nation’s ability to do CER?
Suppose you are a researcher and would like to compare 2 lupus treatments. How will you find the patients to ask if they would like to participate in the study? Using PCORnet, you will be able to search the identity-protected data to find the patients you are looking for.
Why is CER important to patients?
Suppose your coffee pot broke and you needed to replace it. You can fill libraries with easy to find and easy to understand information comparing different models of coffee pots.
- What are your needs (desired outcomes) in a coffee pot?
- Do you want something that keeps coffee piping hot?
- Do you need to brew many cups at a time or single-serve?
- How quickly do you want the coffee to brew?
- Are you a connoisseur and want the highest quality no matter how long it takes? The consumer has access to a wealth of information needed to select a coffee pot, but in the health-care world of selecting a coffee pot, the patient would only be able to ask their doctor for advice on which coffee pot to select.
- What if what’s important to your doctor in a coffee pot is not important to you?
- Why is there so much information available in selecting something as trivial as a coffee pot and nothing available when making the choice about which medication to use?
FOR MORE INFORMATION: http://pcornet.org/patient-powered-research-networks/pprn10/
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Formed in 2010 through the Affordable Care Act, PCORI (Patient-Centered Outcomes Research Institute) is an independent, non-profit health research organization that funds and shares research comparing the effectiveness of the various choices patients have when choosing their care. PCORI’s vision is to provide the patient with the information they need to make decisions that reflect their desired health outcomes. PCORI funds comparative effectiveness research (CER) and PCORnet.
Glossary of Terms
PARTNERS is building the framework to conduct clinical research in pediatric rheumatology in collaboration with families of children with rheumatic disease. Through PARTNERS, (Patients, Advocates, and Rheumatology Teams Network for Research and Service) parents of children with rheumatic diseases will finally have the opportunity to share their opinions on what they feel is important in caring for their children. People with pediatric lupus or arthritis and their families will be directly involved in making decisions about research agendas and designing research studies. Many may feel they are not qualified to make these decisions. However, every family is an expert in caring for their child. They know how their children feel and what is important to them—a vital point of view in prioritizing and designing studies that will answer questions parents may have in caring for their child with a rheumatic disease. PARTNERS’ research participants will have a voice in every stage of research—from asking the research questions to ranking them in order of importance, from designing the study to enrollment strategies, and finally to sharing the results with all patients in easy to understand language.
PCORI – Formed in 2010 through the Affordable Care Act, PCORI (Patient-Centered Outcomes Research Institute) is an independent, non-profit health research organization that funds and shares research comparing the effectiveness of the various choices patients have when choosing their care. PCORI’s vision is to provide the patient with the information they need to make decisions that reflect their desired health outcomes. PCORI funds comparative effectiveness research (CER) and PCORnet. www.pcori.org
PCORnet – Funded by PCORI, PCORnet (National Patient-Centered Clinical Research Network) is a national patient data network that collects data from large multi-centered health care systems like hospitals and data from individual caregivers and people with disease. The large centers are called Clinical Data Research Networks (CDRNs) and the disease- specific programs are called Patient-Powered Research Networks (PPRNs). The data is owned and protected by the individual CDRNs and PPRNs. The goal of PCORnet is to improve the nation’s capacity to conduct comparative effectiveness research (CER). PCORnet brings together patients, care providers and health systems to improve healthcare and advance medical knowledge. With patients and researchers working side by side, PCORnet will be able to explore the questions that matter most to patients and their families. www.pcornet.org
Comparative Effectiveness Research (CER) – Comparative effectiveness research or CER is research that compares treatment choices. For example, which medication will work better for my disease, drug X or drug Y? What are the side effects? People often times have very little evidence-based information when faced with a choice between different treatments for their condition. As a result, they are forced to rely on their physician’s opinion and experience using a particular medication.
Patients – People with pediatric lupus, myositis, and arthritis and their families
CARRA – The Childhood Arthritis and Rheumatology Research Alliance (CARRA) was created to facilitate research aimed at finding the cause and cure for childhood rheumatic diseases. Nearly every pediatric rheumatologist in North America is a member of CARRA. CARRA’s vision is to have every patient participate in research in some way. PARTNERS helps bring this vision to reality. www.carragroup.org
PR-COIN – The Pediatric Rheumatology Care and Outcomes Improvement Network is a network of rheumatologists, nurses, therapists, social workers and support staff at rheumatology centers who in partnership with families are all working together to transform how care is delivered to children with juvenile idiopathic arthritis (JIA). The aim of PR-COIN is to develop and evaluate specific disease management strategies to improve the care of children with JIA and to determine how best to incorporate these strategies into clinical practice. PR-COIN is creating a sustainable network that uses a registry database to measure performance, learn more about the health status of JIA patients as well as to inform future improvement projects. www.pr-coin.org
Arthritis Foundation – Founded in 1948, the Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community. They are boldly leading the fight against juvenile arthritis and childhood rheumatic diseases. The Arthritis Foundation is strongly committed to making sure you have easy access to the resources, community and care you need – and making each day another stride towards a cure. www.arthritis.org
Lupus Foundation of America – Founded in 1977, the Lupus Foundation of America, Inc. is devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. www.lupus.org
Cure JM Foundation® – Founded in 2003, Cure JM Foundation is the only organization solely dedicated to supporting Juvenile Myositis (JM) research and improving the lives of families affected by JM. JM, which includes Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), is a group of rare and life-threatening autoimmune diseases, with approximately two to four children in a million diagnosed each year. The primary symptoms are weak and painful muscles, skin rash (with JDM) and extreme fatigue, but almost every system of the body can be affected. Cure JM Foundation’s mission is to increase awareness, provide support to the families battling this disease, and fund research into better treatments and an eventual cure for JM. www.curejm.org
Self-advocacy – is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life. The goal of self-advocacy is for YOU to decide what you want then develop and carry out a plan to help you get it. It does not mean you can’t get help if you need or want it, it just means that you are making the choices and you have to be responsible for the choices you make.
Self-efficacy – refers to an individual’s belief in his or her capacity to develop behaviors necessary to achieve desired outcomes. Self-efficacy reflects confidence in the ability to exert control over one’s own motivation, behavior, and social environment.
Learning Healthcare System – using technology to collect and share healthcare data from patients, clinicians, and the general population to drive better care with faster results.
Electronic Health Record (EHR) – an electronic version of a patient’s medical history, that is maintained by the provider over time, such as past medical history and medications.
Protected Health Information (PHI) – defined by the Health Insurance Portability and Accountability Act of 1996 as individually identifiable health information.
Patient Reported Outcomes (PROs) – any report about a patient that comes directly from the patient.
Institutional Review Board (IRB) – is a group that reviews and approves research on people. The purpose of the IRB is to make sure that all human research is conducted in accordance with all federal, institutional, and ethical rules.
Health Insurance Portability and Accountability Act (HIPAA) – Passed in 2003, HIPAA is a law that protects privacy and patient medical records. HIPAA allows patients to control how their health facts are used and shared.
Informed Consent Form (ICF) – is a form that is signed before joining a research study. The form has details about the study and its risks.
Parents and patients were asked “What is one word that comes to mind when you hear the word “research”? The larger the word, the more times it was mentioned. Over 25% of parents replied with the word “hope”. This is a powerful message as to the importance of research to those dealing with these diseases on a daily basis.