In addition to leading PVI operations, Diane is an appointed member of the Maryland Health Care Commission and president of a small consulting firm that provides strategic insight, practical guidance, and hands-on implementation to improve health and health care. Her expertise is in consumer engagement, performance measurement, accountability, public reporting, effective communication and technology. She has worked on health policy issues for nearly 25 years at the local, state and national levels, including serving as a Vice President at the National Quality Forum. After a life changing experience as a hospital patient – plus helping her son deal with years of poor care coordination, incorrect billing and other issues stemming from care he received for epilepsy – she has a passion for motivating the health care “system” to be driven by and focused on supporting patients to be true partners who are welcome, respected, and engaged in being as healthy as possible.
Everyone at PVI is
Passionate about patients having a strong voice and equal power in changing health care to be patient-centered and brings unique occupational and life experience to PVI, adding tremendous professional value and wisdom to our work.
Board of Directors
After serving as PVI’s founding Executive Director, Pat continues to guide its growth, with a focus on new initiatives to empower the patient voice, and building collaborations with like-minded partners in the spheres of health care policy, care delivery, research, education, advocacy and innovation.
The sudden and prolonged hospitalization of her father in 2005 proved to be an eye-opening and life-changing experience. An award-winning broadcast journalist for most of her career, Pat’s belief in the power of an informed, empowered and engaged public to foster positive change also inspired her work in patient advocacy. She worked (successfully) to pass two patient safety laws in her home state of Rhode Island, created and deployed a bedside tool to empower patients to have better hospital experiences, and authored a critically acclaimed book on how patients and care providers can work together toward a more functional, satisfying health care system. In gathering patients’ and families’ stories for this book, while continuing her work alongside fellow advocates to improve the quality of care, and on national policy teams at NQF, AHRQ, NBME and others, Pat was struck by the magnitude of the asset residing in the collective experiences of fellow patients and families. She co-founded PVI to bring cohesion and attention to these stories, and to leverage the data found within these experiences to guide improvement. In launching innovative events like the annual PV Impact Awards with the Leapfrog Group, where authentic patient stories take the national stage to change minds and hearts, Pat’s goals as a journalist and change agent come together.
The Informed Patient Institute, a Maryland based non-profit organization that provides online consumer information about patient safety, quality and health care costs. Since 2000, she has worked as a consultant and advisor to non-profit organizations, foundations and government agencies including the California Endowment, AARP, Atlantic Philanthropies, the Markle Foundation, and the Robert Wood Johnson Foundation. Carol was Director of the Center for Beneficiary Services at the Health Care Financing Administration (HCFA - now CMS), where she was responsible for the launch of www.medicare.gov, 1-800 MEDICARE and numerous other outreach and education programs. Prior to HCFA, she was Senior Vice President for Health Pages, a New York City-based consumer health information website, and worked in leadership positions at the Washington (now National) Business Group on Health. She chairs the Joint Commission's Patient and Family Advisory Council, serves on the Board of the National Quality Forum, is President of a family foundation, serves on the Johns Hopkins Hospital Patient and Family Advisory Council and on numerous other committees and task groups. She holds an A.B. degree from Smith College and two Masters degrees in Social Work and Gerontology from the University of Southern California.
For over a decade, Dr. Susan Frampton has been the President of Planetree, a not-for-profit advocacy and membership organization that works with a growing international network of healthcare provider organizations across the continuum of care to implement comprehensive patient-/person-centered models of care. Dr. Frampton, a medical anthropologist, has authored numerous publications, the most recent including the third edition of the edited collection Putting Patients First (Jossey-Bass Publishing, 2013), a chapter in the book Providing Compassionate Health Care (Routledge, 2014), and an opinion piece on patient-preferred practices in Modern Healthcare (January 2014). Dr. Frampton also serves on the editorial/review boards for The Journal of Compassionate Health Care, International Journal of Reliable and Quality e-Healthcare, Social Science and Medicine, and the Canadian Primary Care Innovations peer review panel.
In 2013, Dr. Frampton was appointed co-chair of the National Priorities Partnership (NPP), a collaborative of 52 major national organizations convened by the National Quality Forum working to identify strategies for improving safety, quality and patient-centered outcomes for the U.S. health care system. In 2011, she served on NPP’s Better Care Subcommittee, in 2013 she co-chaired the NPP (Re)admissions Action Team, and in 2014 was appointed to co-chair the Patient Family Engagement Action Team. In addition to this work with NPP, Dr. Frampton has participated on The Joint Commission’s Expert Advisory Panel on culturally competent patient-centered care standards, the National Quality Forum’s Care Coordination Steering Team and the Institute of Medicine’s Patient and Family Council Leadership Consultative Group.
In addition to speaking internationally on culture change, quality, safety, and the patient experience, she was honored in 2009, when she was named one of “20 People who Make Healthcare Better” by Health Leaders Magazine.
Miguel is an internist, geriatrician and palliative medicine physician who serves as Medical Advisor for Test Development Services at the National Board of Medical Examiners (NBME). His work at the NBME includes development of assessments of procedural skills, communication skills, interprofessional team work and professionalism in the computer-based examinations.
Dr. Paniagua served as the internal medicine residency program director at Saint Louis University, Saint Louis, Missouri for five years prior to his appointment at NBME. He graduated from Saint Louis University and received his MD from the University of Illinois College of Medicine, Chicago. Dr. Paniagua completed his internal medicine residency and gerontology & geriatric medicine fellowship at the University of Washington, Seattle, WA. He is a Diplomate of the American Board of Internal Medicine, with sub-specialty certifications in Geriatric Medicine and Hospice and Palliative Medicine. He practices consultative Hospice & Palliative Medicine at The Hospital of University of Pennsylvania and holds adjunct appointments to the faculties of both Saint Louis University School of Medicine and the Perelman School of Medicine at the University of Pennsylvania.
Miguel has served on multiple item writing and reviewing committees at the NBME in the past ten years, and served as a representative member of the National Board (2011-14) as well as a year on the NBME Executive Board (2013-14).
Miguel and his wife, Beth (an internist hospitalist physician), have three boys - Teddy (13), Jonah and Sam (twins, age 11).
Patty is a patient safety expert, and advocate for shared decision-making and informed consent. She founded Citizens for Patient Safety after losing her only child, Michael, to poor and lacking communication. She travels worldwide to educate consumers, train medical professionals, and advise lawmakers about how to foster relationships, systems and environments where shared decision-making and informed consent are the working platform. Patty serves on theNational Advisory Council for the National Agency for Healthcare Quality and Research (AHRQ), and sits on the Board of Governors for the National Patient Safety Foundation, the National Quality & Patient Advisory Council for MedStar Health, the Consumers Union Safe Patient Project, the Board of Trustees for Colorado’s 9Health Fair and others groups. A powerful presenter, Patty is the winner of multiple awards for her work in patient safety, and has been interviewed by the Today Show, The Doctors and other national news organizations.
Sevan has 20 years in enterprise e-commerce and data architecture strategy, currently running his own consulting business. For many years he ran the e-commerce department at Claflin Equipment Co., the nation’s largest independently-owned national medical equipment retailer. Sevan is personally concerned about the lack of training, knowledge and consistency within the healthcare industry, and is excited to help PVI on the technical front by providing the means to extract meaningful and actionable data.
Patient Advisory Council
Alicia is a nationally recognized Speaker and Patient Safety Consultant. A survivor of multiple near-fatal hospital-acquired infections, she co-sponsored and successfully lobbied for passage of two California laws for Patient Safety education and Public Reporting of hospital infection rates. Alicia holds a Graduate Certificate in Healthcare Management and Leadership (UCLA School of Public Health and UCLA Extension) and co-leads the Partnership for Patients, Vulnerable Patient Populations Working Group. Nationally, Alicia works with the Department of Health and Human Services, the CDC, and the National Quality Forum. She was also appointed to the Patient and Family Advisory Board of the highly respected Beryl Institute. Featured on ABC’s 20/20, The Doctors, CBS and Fox News, she has also been profiled in HEALTH Magazine, Consumer Reports, HealthLeaders Media and the LA Times. Alicia has presented before CMS QualityNet Forum, World Health Care Congress, Cleveland Clinic, Milbank Memorial Fund, LeapFrog Group, AORN, APIC and many others.
Donna R. Cryer, JD, has leveraged her personal experience as an IBD and liver transplant patient into professional advocacy as president and chief executive officer of the Global Liver Institute. As well, her healthcare consulting firm, CryerHealth, provides strategic counsel to top biopharmaceutical companies, patient advocacy organizations, and emerging technology firms on patient engagement in health information technology, drug discovery, and clinical decision making. Her blog, DCpatient – An Impatient Patient’s Perspective from Washington, DC, and twitter feed @DCpatient are listed as top resources for insights into emerging e-patients and patient advocates.
Dave, known on the internet as e-Patient Dave, is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. Dave has presented at over 200 conferences and policy meetings internationally in the past two years, including testifying in Washington for patient access to the medical record under Meaningful Use. A co-founder and current co-chair of the Society for Participatory Medicine, e-Patient Dave has appeared in various national news publications, and his writings have been published by numerous industry journals and health news outlets. Dave’s TED Talk, “Let Patients Help,” has over a half million views; volunteers have added subtitles in 26 languages.In 2012 the National Library of Medicine announced that it’s capturing his blog in its History of Medicine Division.
Regina is an activist, artist, speaker, and author, who combines art, technology and social media to better understand and communicate the patient condition. In 2009, she painted a series of murals reflecting the struggles of her late husband, Frederick Allen Holliday II, to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings captured national attention and helped guide public policy. In 2012 Regina organized the Partnership With Patients Summit in Kansas City, MO, bringing together patient advocates, providers, activists and vender partners to speak about patient-centered care and the healthcare landscape. Regina also launched “The Walking Gallery”, painting “patient stories” on the backs of business jackets worn to conferences by medical providers and advocates. Within the last two years Regina has presented before Kaiser Permanente, Stanford Medicine X, The White House Summit on Blue Button, Leap Frog Group, HIMSS, AHRQ, Microsoft, and others.
Libby is Founder and CEO of Patient and Family Centered Care Partners (PFCC Partners). As the mother of three sons living with mitochondrial disease, Libby quickly learned the value of creating partnerships with healthcare providers that would share the vision she and her husband had for the boys. Through these empowered partnerships, “Team Hoy” has ensured that, than 20 years later, the boys are living robust, healthy lives in which mitochondrial disease is a part of who they are, but certainly not the most interesting part. This volume of personal experience over a generation informs Libby’s approach, leading to PFCC Partners’ ongoing collaborations with Institute of Healthcare Improvement, Patient Centered Outcomes Research Institute (PCORI) and with CMS’ Partnership for Patients Project. Libby has written several articles on partnering with healthcare providers, and has presented at multiple national and international conferences on subjects related to patient and family-centered care.
Kathleen is an ardent patient and consumer advocate, author and speaker who is passionate about accountability and public engagement. Her 30+ year career has been dedicated to assuring the public has a voice and to addressing system issues that hinder people’s ability to navigate a complex and often incomprehensible system. She offers tools people can use to hold institutions accountable for quality, cost and access.
She suddenly became a patient in 2014 with a stroke that left her unconscious at home for two days before friends found the manager to reach her. Her rare stroke has a 90% recovery rate and she has returned to patient advocacy with even greater determination. Unlike too many patients she survived her experience financially with help from anonymous friends who covered what her insurance did not. She could also return actively to work.
In 2003 she personally sponsored a $10,000 contest to engage the public in health reform which led to founding the non-profit CodeBlueNow! www.codeblueNow.org that included four former governors on its Honorary Board, both Republican and Democrat. Other contest backers included The Baldwin Resource Group, DoubleTree Hotels and the W.K. Kellogg Foundation.
Her books include: The Alzheimer’s Caregiver, Strategies for Support; The Buck Stops Nowhere: Why America’s Health Care is all Dollars and No Sense, (and a current limited review edition) and Embracing Two Lives, a memoir of life with her son who died in 1991 at age 13.
She was a guest columnist for The Seattle Times 2000-2004. She authored a series on the cost/ benefit of contraceptive coverage in the Puget Sound Business Journal and their partner business journals nationally. Her op-eds also appeared in The Seattle Post-Intelligencer which also ran a 10 consecutive week series, CodeBlueNow! Papers featuring CEOs, foundation executives and private citizens.
Since 2004, Jean has served as the Executive Director of the Connecticut Center for Patient Safety—a non-profit whose mission is to promote patient safety, improve the quality of health care, and protect the rights of patients. Jean has appointments at the National Advisory Council for Healthcare Research and Quality of AHRQ, and theConsumer Council of the National Quality Forum, and is the FDA Consumer Representative on Medical Imagine Drugs Advisory Committee. She is a member at large at the National Board of Medical Examiners, is a PCORI reviewer, is a member of the Consumer’s Union Safe Patient Project, and serves in a number of capacities in local health policy. A tireless and effective advocate for consumers on critical social issues, Jean served as Permanent Commissioner on the Status of Women, as a board member on the Coalition of Aging, the Witness Project, and the Civil Justice Foundation.
United States Navy veteran Jack Whelan is a six year survivor of a rare, incurable blood cancer. He has transitioned from a career as an IT Research Analyst to e-Patient/Research Advocate. He’s an active Research Advocate with AACR, ASCO, DIA, LLS, RDLA and others and frequent speaker and active participant in Life Sciences conferences. He’s a speaker with the Leukemia & Lymphoma Society (LLS) and helps recruit for LLS’ Team in Training and Light the Night, First Connection. (He has received the LLS’s 2014 Quality of Life Award.) As a legislative advocate volunteer for LLS, he recently helped convinced state lawmakers to pass the much-needed Oral Chemotherapy Parity bill. He also recently joined the ranks of advocates who testified before the US Congress. His website is Jack-Whelan.com.
Denise has 10 years of blended management, marketing, and operations experience in the mental healthcare/social service, education, and environmental fields. Her passion for healthcare advocacy is fueled by personal experience, and through the experiences of navigating care and treatment beside the children and adults she has served through Intensive Behavioral, Transitional Housing, and Independent Living programs. Denise most recently worked to integrate the efforts of the Jonnycake Center of Westerly’s Social Service Agency, Food Pantry, and Thrift Store into a cohesive marketing campaign revealing the inextricable client/donor relationship to encourage partnership with Jonnycake programs that strengthen her community. Denise is happy to use her collective skills to further the PVI mission in the position of PVI Operations Director.
Matt brings multiple talents to PVI’s story-gathering process. They include his years as a software and digital workplace designer; a love of writing that drew him to acquire an MFA in Creative Writing from Columbia University; and a deep compassion, rooted in his own medical encounters, for the challenges patients face. Matt experienced firsthand the traumas of cancer years ago when his otherwise typically middle American boy’s life of Scouts, Babe Ruth baseball, and Schwinn bikes was sidelined by his younger brother’s losing battle with leukemia. In 1999, Matt himself was diagnosed with Chronic Lymphocytic Leukemia. Since then, Matt has become a ‘power-user’ of diverse medical facilities, providers, and treatments. He is now a devoted proponent of patient advocacy and empowerment, speaking frequently on their behalf at the Leukemia Lymphoma Society and Memorial Sloan Kettering Cancer Center. Matt also grasps the potential of identifying the data PVI is gathering from patients' stories, having designed software for financial services at Merrill Lynch, JPMorgan, and Citigroup, and now as a digital workplace designer, professional developer, data architect, project manager and senior analyst. Matt is also a published author of fiction and essays, enjoys playing standup bass in multiple musical groups, and takes great joy in being the father of a college-aged son and daughter.
Allison was diagnosed with Restrictive Cardiomyopathy at the age of 15 months. Growing up, she was unable to play sports or take gym class. Even walking up the stairs to her bedroom would make her heart race. She was also very weak and had blue lips due to poor circulation. In third grade, she fainted in school and received a pacemaker at Hasbro Children's Hospital in Providence, RI. She also needed a wheelchair just to get around, as she was unable to walk long distances.
She received a heart transplant in October of 1998 at the age of 11 at Boston Children's Hospital.
She is a 2009 graduate of Northeastern University, where she earned her Bachelors Degree in Communications Studies.
She enjoys volunteering her time to various organizations, including the American Heart Association, the New England Organ Bank, the Rhode Island Organ Donor Awareness Coalition, and is a counselor at two heart camps. She aims to educate others about the importance of speaking up for yourself in the healthcare setting.
Madison is a recent graduate of Tufts University with a B.A. in Community Health and Anthropology. Her service experiences in Guatemala, Costa Rica and Peru fueled her interest in the intersection between human health and culture. Through grassroots organizing with the Partners In Health Engage campaign, she contributed to educational and advocacy work focused on global health equity and building a social movement dedicated to health as a human right. Currently, she is participating in a year of National Service through City Year Boston, which is an education-focused nonprofit that places AmeriCorps members in Boston Public Schools to provide additional support to students at risk for falling behind. Her passion for patient advocacy was ignited after witnessing the aging process of her grandparents when she was introduced to the controversies surrounding end-of-life care. With her growing interests in health education and health communications, Madison is excited to help PVI build a strong social media presence to support building community by creating an online space to further assist patients, family members, consumers and others as they interact with the healthcare system.
Our efforts are complemented by a team of experienced, passionate and trained public speakers. You may learn more about it, below: