SIDM Approved for a $250,000 Engagement Award from the Patient-Centered Outcomes Research Institute

Award Will Address Gap in Patient Representation in Development of Research Around Diagnostic Error and Establish a New Academy of Patient Partners

FOR IMMEDIATE RELEASE

August 30, 2017 - The Society to Improve Diagnosis in Medicine (SIDM) has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). The 18-month project, Patients Improving Research in Diagnosis, will develop and evaluate an innovative curriculum to train Patient Partners to participate in the design, execution and dissemination of research to improve diagnosis. SIDM and its partners from Project Patient Care (PPC) and the MedStar Institute for Quality and Safety will also work together to develop a new Academy for Patient Partners.

The 2015 National Academy of Medicine (NAM), formerly the Institute of Medicine (IOM), report on Improving Diagnosis in Health Care recommended increased research around the diagnostic process and encouraged greater patient engagement to address the problem of diagnostic errors in medicine. The report noted that “most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences.”

“Though many programs have prepared patients for participation in research design and execution directed towards treatment choices, no programs currently focus on the unique requirements of research in the process of diagnosis and the choices that patients face during that process,” said Sue Sheridan, Board Member of the Society to Improve Diagnosis in Medicine and noted patient safety expert. “There is currently no established curriculum or training program to help patients become full partners in research efforts to eliminate the risk of diagnostic error that harms them.”

Patient Partners will be recruited from organizations representing patients and other leading healthcare organizations. Each Patient Partner will be assigned to a Research Mentor who will facilitate their engagement in research activities, evaluate the effectiveness of the program, and plan for its sustainability. The program will work toward six goals:

  • Engage a diverse set of disease-based and other healthcare organizations in diagnostic research,
  • Train Patient Partners to be ready to collaborate in diagnostic research,
  • Mentor Patient Partners to provide an effective support network,
  • Promote Patient Partners to active researchers in diagnosis,
  • Evaluate the project to inform future work, and
  • Develop a plan to sustain the Patient Partner training initiative for diagnostic research through an Academy for Patient Partners.

“PCORI and others have recognized the need to engage patients and relevant stakeholders in the design and conduct of research to drive outcomes that matter to patients,” said Mark Graber, President of the Society to Improve Diagnosis in Medicine. “As the research field of diagnostic error grows, we must work to ensure that there are patients who can help shape the research that leads to new evidence-based guidance to improve the diagnostic process.”

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 healthcare 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,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with the Society to Improve Diagnosis in Medicine, Project Patient Care and the MedStar Institute for Quality and Safety to share the results.”

PPC will direct patient and researcher engagement throughout the project. PPC is a nonprofit organization bringing the voice of the person, patient, and family into every aspect of the health and healthcare system. PPC has been a champion in bringing together patients, families, and providers in partnership to achieve improve quality and safety outcomes.

“Project Patient Care is tremendously excited about this opportunity for patients and families to be engaged as partners in diagnostic research that will be beneficial to improving patient care and outcomes. This is a pivotal moment in time where the patient and family voice is being recognized and integrated into diagnostic research,” said Pat Merryweather, Executive Director of Project Patient Care (PPC). “We are looking forward to working with all of the partners on this initiative and grateful for SIDM’s leadership and vision for patient partnership in diagnostic research.”

Kelly M. Smith, Ph.D., Director of Quality and Safety Research at the MedStar Institute for Quality and Safety (MIQS), will lead curriculum development and evaluation for the project. Dr. Smith is a leader in engaging patient partners in research to improve patient safety and quality within healthcare systems.

SIDM’s project and the other projects approved for funding by the PCORI Engagement Award 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.pcori.org/content/eugene-washington-pcori-engagement-awards/.

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About the Society to Improve Diagnosis in Medicine (SIDM)
The Society to Improve Diagnosis in Medicine (SIDM) is a nonprofit organization whose members include clinicians and other healthcare professionals, patients and every stakeholder in the diagnostic process. SIDM sponsors the annual Diagnostic Error in Medicine conference being held October 8-10, 2017 in Boston, MA. In 2015, SIDM established the Coalition to Improve Diagnosis, a collaboration of 34 leading healthcare organizations.

About Project Patient Care (PPC)
Project Patient Care (PPC) is an independent nonprofit organization working to prevent medical errors and continuously improve healthcare quality. We are a diverse community of patients, family members of patients, healthcare professionals and organizational leaders. We care deeply about ensuring that every patient gets the right care at the right time. PPC’s mission is to engage consumers as partners in healthcare and mobilize diverse healthcare stakeholders to provide the best possible care to every patient every time, by eliminating preventable harm and implementing systemic change to ensure consistent excellence.

About MedStar Institute for Quality and Safety
The MedStar Health Institute for Quality and Safety (MIQS) aligns with and catalyzes the intellectual power within MedStar Health. The MIQS Team is devoted to supporting and accelerating the MedStar Health quality and safety mission through synergistic interaction with our patients, care teams and external partners.

About MedStar Health
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.

About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.

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Mapping process for diagnostic error
Patients Improving Research in Diagnosis

SIDM's Patients Improving Research in Diagnosis (PAIRED) program brings together patient advocates with lived experience and expert researchers to integrate the patient perspective in research efforts.