News Article | November 17, 2016
CINCINNATI - In some good news for families of children recovering from complex pneumonia, doctors recommend in a study published by Pediatrics it's better to send kids home from the hospital with oral instead of intravenous antibiotics. Children with complex pneumonia typically require one to three weeks of antibiotic therapy after hospital discharge to treat residual infection. The relief of going home without a needle and tube stuck to a child's arm also comes with other benefits, according to a multi-institutional research team led by Cincinnati Children's Hospital Medical Center. Appearing in the journal's Nov. 17 eFirst edition, the retrospective study of 2,123 children at 36 hospitals found oral antibiotics are as effective as intravenous in managing residual disease. Taking medication by mouth also avoids the risk of infection and other medical complications from peripherally inserted central venous catheters, or PICC lines. "PICC line complications can be serious, resulting in hospital readmission, additional procedures, and more medications, as well as missed work or school." says Samir Shah, MD, MSCE, the study's lead author and director of Hospital Medicine at Cincinnati Children's Hospital Medical Center. "It's not surprising that children and families would rather not use PICC lines. Our findings, which provide compelling evidence to support the use of oral antibiotics for children with complex pneumonia, will contribute to safer care for children across the country." The paper is the first multi-center research project to look at the issue. The study is a collaboration of the Pediatric Research in Inpatient Settings Network -- a group of pediatric hospitalists focused on improving care delivery to children. About 15 percent of children hospitalized for pneumonia develop complicated pneumonia, which includes the buildup of fluid around the lungs caused by pleural infection, according to the authors. National treatment guidelines do not call for the use oral antibiotics after leaving the hospital, although they do highlight the risk of giving the medicine intravenously. The researchers report that although PICC use is overall not common, they found substantial variation in post-discharge use across the 36 hospitals in the study with almost three-fourths of children at some hospitals receiving antibiotics by PICC for complex pneumonia. An important goal of the research is helping reduce what the authors call "unwarranted variation" or differences in care that are not related to the child's illness or underlying medical conditions. Of the 2,123 children in the study, 281 (13.2 percent) received antibiotics through a PICC line after release from the hospital, with the rest getting oral antibiotics. Treatment failure rates were not significantly different between the groups -- with 3.2 percent failure rate for kids on a PICC line and 2.6 percent for the oral antibiotics group. PICC-related complications occurred in 7.1 percent of children in that group; adverse drug reactions were recorded for 0.6 percent of children taking oral medication. This led the authors to conclude that children with complicated pneumonia should "preferentially receive" oral antibiotics when released from the hospital when effective oral options are available. Funding support for the study came from the Patient-Centered Outcomes Research Institute (grant # 4252940000).
News Article | November 16, 2016
WASHINGTON, DC--(Marketwired - November 16, 2016) - Suzanne Groah, MD, MSPH, has been awarded a $500,000 grant by the Craig H. Neilsen Foundation to support screening for urinary tract infections (UTIs) among patients with spinal cord injuries at MedStar National Rehabilitation Network. "Urinary tract infection is the most common bacterial infection seen in the outpatient setting and the most common healthcare-associated infection, making it a major worldwide public health problem," said Dr. Groah. In addition, spinal cord injury patients are at high risk for recurrent UTI, which is known to cause significant pain and discomfort; however, mobility limitations often create barriers to these patients receiving comprehensive care. The study, "Development of a Urinary Symptom Questionnaire for People with Neuropathic Bladder," will develop a questionnaire for individuals being treated for bladder dysfunction due to spinal cord injury to assist them in self-assessments of their health. The process of creating the questionnaire is centered on working with patients with spinal cord injuries, focusing on utilizing their feedback to develop usable tools for others through focus groups and interviews. Focus groups will help develop the questionnaire, which will be validated and assessed by a large, diverse, national sample of people living with spinal cord injury. The goal is that other patients will be able to use the tool to self-assess if their symptoms may be related to a UTI. "When the study team surveyed people with neuropathic bladder due to spinal cord injury and spina bifida, we found that UTI is a problem for more than 80 percent of people," Dr. Groah said. By creating this tool, Dr. Groah's research team will have an enhanced diagnostic approach to UTIs within this population that will be useful in future research, clinical care, patient education, and patient and clinical decision-making. This research is building on a study that currently is recruiting patients, "The Impact of Self-Management with Probiotics on Urinary Symptoms and the Urine Microbiome in Individuals with Spinal Cord Injury and Spina Bifida," which was funded by a Patient-Centered Outcomes Research Institute grant in 2014. Dr. Groah is the director of Spinal Cord Injury Consultation Liaison Service and of Spinal Cord Injury Research at MedStar National Rehabilitation Network and associate professor of rehabilitation medicine at Georgetown University. The Craig H. Neilsen Foundation's funding is dedicated to supporting both programs and scientific research to improve the quality of life for those affected by and living with spinal cord injury. The MedStar Health Research Institute is the research arm of MedStar Health, the largest healthcare provider in Maryland and the Washington, D.C., region. MHRI provides scientific, administrative and regulatory support for research programs throughout the MedStar Health system. MHRI's expertise includes translational research into disease prevention, diagnosis and treatment. These programs complement the key clinical services and teaching programs in the 10 MedStar hospitals and other MedStar entities. For more information, visit MedStarResearch.org. MedStar Health is a not-for-profit health system dedicated to caring for people in Maryland and the Washington, D.C., region, while advancing the practice of medicine through education, innovation and research. MedStar's 30,000 associates, 6,000 affiliated physicians, 10 hospitals, ambulatory care and urgent care centers, and the MedStar Health Research Institute are recognized regionally and nationally for excellence in medical care. As the medical education and clinical partner of Georgetown University, MedStar trains more than 1,100 medical residents annually. MedStar Health's patient-first philosophy combines care, compassion and clinical excellence with an emphasis on customer service. For more information, visit MedStarHealth.org
News Article | November 21, 2016
PASADENA, Calif., November 21, 2016 -- Medicare Advantage patients who had tailored post-hospital visits with primary care clinicians, known as POSH visits, were less likely to experience hospital readmission than those who did not have an outpatient visit, according to a Kaiser Permanente study published today in JAMA Internal Medicine. Tailored POSH visits are scheduled for the patient while he or she is still in the hospital and focus on following up on treatment plans after discharge. In comparison, regular primary care clinician outpatient visits may focus on routine care and not cover specific issues related to a patient's recent hospitalization. Researchers found that Medicare Advantage patients who had one or more outpatient visits with primary care clinicians within seven days of being discharged from the hospital to their homes were 12 to 24 percent less likely to experience hospital readmission than those who did not have an outpatient visit. And patients who had a POSH visit were 28 percent less likely to experience hospital readmission, compared to those completing any other type of outpatient visit. "While other studies had mixed results regarding the effectiveness of post-hospitalization visits, our study highlights the value of both routine and more tailored POSH visits in ensuring continuity of care once a patient transitions from hospital to home," said Ernest Shen, PhD, research scientist biostatistician at the Kaiser Permanente Southern California Department of Research & Evaluation. "Although any primary care clinician outpatient visit appeared to reduce readmission risk compared to no outpatient visit, the POSH visit provides the added benefit of the care team being alerted to, and therefore better prepared to address, patients' post-discharge needs." The study examined the electronic health records of more than 71,000 Medicare Advantage patients who were discharged to home from Kaiser Permanente hospitals between January 1, 2011 and December 31, 2014. To address the potential bias that patients who had an outpatient visit may have been less sick than those who did not, the researchers accounted for several important factors, including severity of the condition during hospitalization, underlying illnesses and functional status. Other authors of the study include Brian Mittman, PhD, and Huong Q. Nguyen, PhD, RN, from the Kaiser Permanente Southern California Department of Research & Evaluation; Sandra Y. Koyama, MD, Dan N. Huynh, MD, Heather L. Watson, MBA, and Michael H. Kanter, MD, from Clinical Operations, Kaiser Permanente Southern California. This study was partially supported through a collaboration with Project ACHIEVE, a Patient-Centered Outcomes Research Institute (PCORI) awardee (TC-1403-14049), and internal operational funding from Kaiser Permanente Southern California. About the Kaiser Permanente Southern California Department of Research & Evaluation The Department of Research & Evaluation conducts high-quality, innovative research into disease etiology, prevention, treatment and care delivery. Investigators conduct epidemiologic research, health services research, biostatistics research, and behavioral research as well as clinical trials. Major areas of study include chronic disease, infectious disease, cancer, drug safety and effectiveness, and maternal and child health. Headquartered in Pasadena, California, the department focuses on translating research to practice quickly to benefit the health and lives of Kaiser Permanente Southern California members and the general public. Visit kp.org/research. Kaiser Permanente is committed to helping shape the future of health care. We are recognized as one of America's leading health care providers and not-for-profit health plans. Founded in 1945, Kaiser Permanente has a mission to provide high-quality, affordable health care services and to improve the health of our members and the communities we serve. We currently serve more than 10.6 million members in eight states and the District of Columbia. Care for members and patients is focused on their total health and guided by their personal physicians, specialists and team of caregivers. Our expert and caring medical teams are empowered and supported by industry-leading technology advances and tools for health promotion, disease prevention, state-of-the-art care delivery and world-class chronic disease management. Kaiser Permanente is dedicated to care innovations, clinical research, health education and the support of community health. For more information, go to: kp.org/share.
News Article | November 3, 2016
The research study is open to participants worldwide to advance understanding and treatments for a rare disease affecting the bone, skin and endocrine organs WASHINGTON, DC--(Marketwired - November 03, 2016) - The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients around the world to share information about FD/MAS. Its purpose is to build an international resource to be used by scientists in future research. The study launched on October 31. The FD/MAS Patient Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. The Fibrous Dysplasia Foundation may share the data with individuals or institutions conducting research or clinical trials, as approved by the study's governing board that includes scientists, doctors, patients and patient advocates. In addition to medical information, the FD/MAS Patient Registry will be used to survey patients about the priority of potential future research directions. The opportunity to engage patients and families in the development of future research questions was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award, administered on behalf of PCORI by Catherine Fairchild, JD, in collaboration with patient advocates Lisa Heral, RNBA, CCRC, and Amanda Konradi, PhD, and FD/MAS researchers Alison Boyce, MD, and Andrea Burke, MD, DMD. Fairchild, President of the Fibrous Dysplasia Foundation and the Principal Investigator of the FD/MAS Patient Registry, says, "The FD/MAS Patient Registry is the first FD/MAS research project in history where families and researchers worked together to identify research objectives and to design a study that could meet those objectives. The study was painstakingly developed over several years in collaboration with leading international clinical research centers in order to optimize the scientific value of the data." The Fibrous Dysplasia Foundation is launching the study in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. The Fibrous Dysplasia Foundation is a member of NORD. The organizations work together to eliminate the challenges that rare disease patients face. "NORD's natural history studies platform empowers patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases," said NORD President and CEO Peter L. Saltonstall. "We are glad to be working with the Fibrous Dysplasia Foundation on this project and look forward to capturing the diverse experiences of patients living with this complex disease." To help drive awareness and participation, the Fibrous Dysplasia Foundation will engage patients and families through a multi-channel campaign that includes in-person events, print mail, email and social media. The Fibrous Dysplasia Foundation will also equip their network of expert physicians to raise awareness of the FD/MAS Patient Registry among the patients they treat. "The success of this project is dependent on community participation. Every patient that joins the patient registry makes a difference," said Fairchild. "We believe that by 2018 the FD/MAS Patient Registry could become the largest study of FD/MAS patients ever." FD/MAS is a rare somatic genetic disorder that occurs in approximately one out of every 100,000 people. Fibrous dysplasia bone lesions can occur in one, several, or many bones. Common complications of fibrous dysplasia include fractures, deformity and pain. The fibrous dysplasia bone lesions can occur in combination with skin and endocrine disease. Patients with FD/MAS may have areas of increased skin pigmentation called café-au-lait spots. Endocrine problems can include precocious puberty, hyperthyroidism, growth hormone excess, phosphate wasting, and Cushing's syndrome. Patients may experience involvement of the gastrointestinal system, and pancreas. Patients can have one or many features of the disease, and these features can occur in any combination. FD/MAS currently has no cure. For more information about the FD/MAS Patient Registry, visit www.fdmasregistry.org. The Fibrous Dysplasia Foundation was founded in 2004. The mission of the Fibrous Dysplasia Foundation is to fund and encourage research into treatments and cures for fibrous dysplasia (FD), McCune-Albright syndrome (MAS), cherubism, and related diseases; to develop information and referrals for patients living with FD, MAS, cherubism and related diseases; to promote increased awareness, knowledge and understanding about FD, MAS, cherubism and other related diseases among medical professionals; and to promote mutual support among patients and families through support groups and networking opportunities. For more information about the Fibrous Dysplasia Foundation, please visit www.fibrousdysplasia.org. The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 250 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.
News Article | February 15, 2017
A national breast cancer research project has chosen Sanford Health to be the repository for the specimens collected as part of the 100,000 woman study. The five-year study is called Women Informed to Screen Depending on Measures of risk, or WISDOM, and is being conducted by the Athena Breast Health Network, a collaboration among five University of California medical centers and Sanford Health’s Edith Sanford Breast Center. Investigators are studying routine annual screenings and personalized screenings based on genetic information to determine which method is more effective in reducing false positives and misdiagnoses of breast cancer. Sanford’s genomic lab will house the specimens collected from consenting women as part of this research. The study will enroll 100,000 women across the United States. Researchers from across the globe will have access to the data collected to use in other breast cancer studies. “Sanford Health has been an outstanding partner in our breast health research and clinical care initiatives here at the University of California,” said Sandy Borowsky, the principal investigator at the University of California, Davis site of Athena. “Sanford demonstrated a commitment to improving care for women through innovative thinking and the hard work of collecting data across multiple sites. Their professionalism and institutional support for a first class biospecimen lab made the choice clear. It’s a true win-win opportunity.” The Athena Breast Health Network in 2015 received a $14.1 million grant from the Patient-Centered Outcomes Research Institute, or PCORI, to fund WISDOM. Edith Sanford Breast Center has been a member of Athena since 2013. Other partners include the University of California campuses in San Francisco, San Diego, Davis, Los Angeles and Irvine. “Sanford Health enjoys beneficial integration of its clinical and research operations, which has provided us the infrastructure to support the WISDOM repository,” said David Pearce, Ph.D., executive vice president for Sanford Research. “The data gathered and stored here have the potential to improve breast cancer screenings for women everywhere.” Women age 40-74 years old who have not had a prior breast cancer diagnosis and receive care at an Athena site are eligible to enroll. Edith Sanford Breast Center in Sioux Falls expects to open enrollment in early 2017. About Sanford Health Sanford Health is an integrated health system headquartered in the Dakotas. It is one of the largest health systems in the nation with 45 hospitals and nearly 300 clinics in nine states and four countries. Sanford Health’s 28,000 employees, including more than 1,300 physicians, make it the largest employer in the Dakotas. Nearly $1 billion in gifts from philanthropist Denny Sanford have allowed for several initiatives, including global children's clinics, genomic medicine and specialized centers researching cures for type 1 diabetes, breast cancer and other diseases. For more information, visit sanfordhealth.org.
News Article | December 5, 2016
ROCHESTER, Minn. -- Using a shared decision-making aid to involve patients more in their own care decisions can prevent unnecessary hospitalization or advanced cardiac tests for patients reporting low-risk chest pain -- for the cost of about 1 minute of time. So says a study from Mayo Clinic researchers, published online today in The BMJ. MULTIMEDIA ALERT: Video and audio are available for download on the Mayo Clinic News Network. According to the Centers for Disease Control and Prevention, the second highest cause of emergency department visits is chest pain. "Chest pain can be caused by a wide variety of problems," says Erik Hess, M.D., study lead author and emergency medicine physician at Mayo Clinic. "While we recommend that people seek immediate medical help when experiencing chest pain, the next steps can vary - and be unnecessarily costly." Patients at low risk for acute coronary syndrome - a range of conditions that includes a heart attack and is associated with sudden, reduced blood flow to the heart - are frequently admitted for observation and cardiac testing. Dr. Hess and his colleagues say this is because, "Given the potential for missing a diagnosis of acute coronary syndrome, clinicians have a very low risk threshold to admit patients for observation and advanced cardiac testing." "Despite little possibility that these low-risk patients are experiencing acute coronary syndrome, emergency physicians are more likely to default to admission for observation and additional testing," says Dr. Hess. "This presents a substantial unnecessary burden and cost to the patient and the health care system." The research team felt that introducing a shared decision-making approach might not only increase patients' understanding of their symptoms and risks, but also allow them to participate more actively in deciding whether hospital admission and advanced cardiac testing were necessary. Using the Chest Pain Choice decision aid, emergency department physicians and patients with low-risk chest pain can estimate the risk for acute coronary syndrome within the next 45 days. Based on that risk, they can then have a joint discussion on whether hospital admission and advanced cardiac testing is warranted, or whether a follow-up appointment with primary care or cardiology is a more appropriate step. In a randomized clinical trial across six emergency departments in five states, the researchers compared usual care for 447 patients to 451 patients receiving the Chest Pain Choice decision aid intervention. The primary outcome, selected by patient and caregiver representatives, was patient knowledge. Secondary outcomes were involvement in the decision to be admitted, proportion of patients admitted for cardiac testing, and the 30-day rate of major adverse cardiac events. The team showed that using the decision aid resulted in: Both patients and physicians were satisfied with the decision aid and its use, which, according to the study authors, "took an average of one additional minute of clinician time." Shared decision-making resulted in significantly less overuse of hospitalization and advanced cardiac testing, thereby reducing the overall burden on the health care system, as well as potential costs for patients. "When patients are involved with their care decisions, it is more likely they will get the right care for their concerns," says Dr. Hess. "We believe that the Chest Pain Choice decision aid will make it easier for patients and physicians to have a thoughtful discussion and make an individualized care plan that is less likely to overuse unnecessary services." Dr. Hess first presented the Chest Pain Choice decision aid at the American College of Cardiology's 65th Annual Scientific Session (Read news release.). The study was funded by the Patient-Centered Outcomes Research Institute and the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. It was conducted in collaboration with the Knowledge and Evaluation Research Unit. This unit focuses much of its efforts on developing and validating shared decision aids across health care. Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing. For more information, visit mayoclinic.org/about-mayo-clinic and newsnetwork.mayoclinic.org.
News Article | November 17, 2016
Concerns about weight gain may be driving contraception choices, according to Penn State College of Medicine researchers. Women who are overweight or obese are less likely than women who are not overweight or obese to use the birth control pill and other hormonal contraceptive methods. Weight gain is one of the most commonly cited reasons why women stop using hormonal contraception, and therefore may play a role in the risk of unintended pregnancies, said Cynthia H. Chuang, professor of medicine and public health sciences. Although oral contraception likely does not cause weight gain, says Chuang, many women attribute increasing weight with the birth control pill. The birth control shot has been associated with weight gain in younger women. Chuang and her co-researchers wanted to learn if women's weight or their perception of weight influenced the type of birth control they used, if any. To do so, they examined demographic and survey data from almost 1,000 privately insured women in Pennsylvania. The researchers categorized weight category based on body mass index (BMI), a measure of body size based on height and weight. They determined that overweight and obese women were more likely than women who are not overweight or obese to choose forms of birth control known as long-acting reversible contraceptives (LARCs), and less likely to use methods like the pill, the shot, the patch and the ring. There was also a trend toward overweight and obese women to be more likely to use non-prescription methods such as condoms, withdrawal and natural family planning, or no method. The researchers will report their results in the journal Contraception. Long-acting reversible contraceptives include intrauterine devices, commonly known as IUDs, and the contraceptive implant. LARCs do not contain estrogen, which some some women believe causes weight gain. "What we think may be happening is that women who are overweight and obese may be more likely to choose methods other than the pill or the shot because of fear of weight gain," Chuang said. "As a result, they are choosing both more effective methods (LARCS) and less effective, non-prescription methods." Researchers found that 23 percent of overweight and 21 percent of obese women used LARCs, which are the most effective forms of birth control. In contrast, only 6 percent of under-weight and normal-weight women used LARCs in the study. "We were actually glad to see that overweight and obese women were at least more likely to choose LARCs because I was expecting to see these women more likely to use non-prescription methods," Chuang said. Heavier women also were more likely than normal-weight women to use less-effective non-prescription birth control methods -- such as condoms -- or no method at all. However, these results did not reach statistical significance, Chuang said. The researchers also evaluated whether perception of weight influenced contraceptive choice. In the study, half of the women perceived themselves to be overweight, although only around 42 percent of them were overweight or obese based on BMI. This perception, however, did not appear to influence birth control choice. "Women may be worried about weight gain when they're making decisions about birth control, so clinicians need to be aware of that," Chung said. "It could be an opportunity to counsel women about LARCs, which are more effective forms of contraception." Other researchers on this project were Kalpesh Bhuva and Erik B. Lehman, Department of Public Health Sciences; and Jennifer L. Kraschnewski, Division of General Internal Medicine and Department of Public Health Sciences. A Patient-Centered Outcomes Research Institute Program Award funded this research. Penn State Clinical and Translational Science Institute supported this research.
News Article | October 27, 2016
Washington, D.C., Oct. 27, 2016 - The Alliance for Aging Research (Alliance) announced today that it has been approved for a $250,000 Eugene Washington PCORI Engagement Award to create a first-ever Senior Patient and Family Caregiver Network (SP&FCN) by the Patient-Centered Outcomes Research Institute (PCORI). This network will address the significant under-representation of older adults and their family caregivers in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). PCOR informs patients and their family caregivers how to better communicate with health care providers and subsequently make more informed health care decisions. CER directly compares existing health care interventions to determine which work best for specific patients and which pose the greatest benefits and harms. "Older adults account for 36 percent of total U.S. personal health care spending and 42 percent of all prescription drug consumption and will make up 20 percent of the total population by 2030. Yet, the evidence base for treating older adults is sparse because they are underrepresented in clinical trials," says Susan Peschin, MHS, president and CEO at the Alliance and the SP&FCN project lead. "The reasons range from a high likelihood of comorbidity exclusion in research protocols, to perceived financial issues and transportation challenges, to a fear of the science and the system. Engaging senior patients and their family caregivers will open a window into how such barriers impact access to effective treatments and services." The Alliance's SP&FCN will focus on barriers researchers face to conduct PCOR/CER in Alzheimer's disease, sarcopenia, which is age-related, progressive loss of muscle mass and strength; atrial fibrillation; and persistent pain and disability. The main objective of the SP&FCN is to develop a patient/family caregiver-led nationwide cohort of advocates with: The SP&FCN program will be overseen by an advisory council that includes older adult patients and family caregivers, as well as leading geriatrics, cardiology, neurology, and aging research experts and future potential project partners. The network and training will be designed and implemented by patients, stakeholders, and the health care community. This integrated team will then further support training of additional patients to fully participate in PCOR/CER. The Alliance is partnering with Leidos Corporation for this project. The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire health care enterprise and to involve them meaningfully in every aspect of PCORI's work. "This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake," says Jean Slutsky, PCORI's chief engagement and dissemination officer. "We look forward to following the project's progress and working with the Alliance to share the results." The Alliance's project and the other projects approved for funding by this program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI's engagement goals and objectives, as well as program criteria. For more information about PCORI's funding to support engagement efforts, visit http://www. . About the Alliance for Aging Research The Alliance for Aging Research is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application in order to vastly improve the universal human experience of aging and health. Visit http://www. for more information. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
Fleurence R.L.,Patient-Centered Outcomes Research Institute |
Sheridan S.E.,PCORI |
Johnson L.B.,LymeDisease.org |
Health Affairs | Year: 2014
The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patientpowered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and costeffectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health. © 2014 by Project HOPE - The People-to-People Health Foundation.
News Article | February 28, 2017
NEW YORK and MIAMI, Feb. 28, 2017 /PRNewswire-USNewswire/ -- The Parkinson's Foundation has received a $250,000 award to develop new patient-centered recommendations to improve the health of women living with Parkinson's disease. The funding provided through a Patient-Centered Outcomes...