This conference took place on October 21, 2011, in Rockville, Maryland. The conference explored innovative approaches for engaging stakeholders, including patients and consumers, clinicians, and others, to provide input to the design, implementation, and other aspects of research. Presenters from public and private organizations describe promising technologies, activities, and other innovative approaches they have used to involve patients, consumers, clinicians and communities in their work. Topics include Online Collaborative Platforms, Online Communities, Grassroots Organizing, and Collaborative Research.

Meeting summary (PDF, 474 kB).

Presentations

These audio presentations are available in a streaming video format. For help accessing these files, please visit Viewers, Players, and Plug-ins.

Overview of Types of Online Collaborative Platforms

Chris Haller, Founder and CEO, Urban Interactive Studios

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Using Collaborative Platforms for Communities of Practice

Lakshmi Grama, Senior Digital Content Strategist, National Cancer Institute (NCI)

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American Medical Association (AMA) App Challenge and AMA Idealab

Brian Eaggleston, Physician Outreach and Retention Manager, AMA and Robert Hicks, Business Development Process Director, AMA

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Overview and Online Communities of Health Care Professionals

Atul Shah, Senior Vice President, Strategic Client Development, Within 3

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Online Communities: Value for Patients, Researchers, Clinicians

Dave Clifford, Public Health and Governmental Affairs, PatientsLikeMe

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Community Engagement Initiative: Meaningful Public Participation in EPA Waste Programs

Ellen Manges, Senior Advisor, Office of Solid Waste and Emergency Response (OSWER), Environmental Protection Agency (EPA)

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High Plains Research Network Consumer Advisory Council

Ned Norman and Sergio Sanchez, of the Community Advisory Council of High Plains Research Network

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Engagement of Mental Health Consumers in Research and Evaluation

Ingrid Goldstrom, Director of the Evaluation of Children’s Mental Health Initiative (CMHI), Substance Abuse and Mental Health Services Administration (SAMHSA)

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United Kingdom Initiatives: James Lind Alliance, and INVOLVE Programs

Ela Pathak-Sen, Director, Commotion

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Biosketches

Dave Clifford, as head of Public Health and Government Affairs at PatientsLikeMe, is responsible for interfacing with public policy makers and actors in public health to improve outcomes driven by patient voice and patient-centered data. Previously, Mr. Clifford had worked as a consultant to the Defense Advanced Research Projects Agency, where he supported neuroscience, prosthetic device, biomedical manufacturing, and infectious disease programs. In this role, he assisted in creating and administering the Predicting Health and Disease and Revolutionizing Prosthetics programs as well as the Reorganization and Plasticity to Accelerate Injury Recovery (REPAIR) program, a major neuroscience effort. He holds a Masters of International Affairs in Science and Technology Policy from the George Washington University.

Brian Eaggleston leads the AMA's membership marketing efforts though email/personalized URLs and telemarketing campaigns. He co-led the AMA's first-ever App Challenge and generated major media interest and engagement from the medical community. Brian's promotion of this challenge and other member retention campaigns has resulted in new engagement activities with physicians across the country. With more than 15 years of marketing experience, Brian has a proven track record in reinventing sales and marketing programs with a focus on technology. Prior to joining the AMA, Brian was a marketing manager at KB Home, a leading homebuilder in the United States and France. Previously he held marketing and project management positions at Qwest Communications where he was responsible for streamlining customer win-back processes during the height of telecom deregulation.

Lakshmi Grama is Senior Digital Content Strategist at the National Cancer Institute’s Office of Communications and Education. She oversees content strategy for NCI’s Web and New Media channels and works on projects to leverage the use of new media channels at NCI. This includes leading teams that are working on “evolution” of the NCI website and new media channels on YouTube, Facebook, and Twitter as well as NCI’s mobile presence. Lakshmi is also involved in the development of guidelines for use of social media and coordinating a new media community of practice at NCI. Lakshmi has worked at NCI since 2001 but has been in the federal health information and communications space for longer. Lakshmi holds Masters Degrees in Library and Information Science, Applied Linguistics, and English Literature.

Chris Haller is a nationally-recognized Web developer and Online Engagement strategist, with a broad background in urban planning and communication technologies. These skills, combined with many years of experience in consulting for urban planning projects, are what brings Urban Interactive Studio's mission – to enhance communication and improve decision-making in urban planning – to life. In April 2011 he was named one of the Top 25 thinkers in Urban Planning Technology by the urban planning magazine Planetizen.

As UIS’ founder, Chris is closely involved in the day-to-day development of interactive Web and mobile applications, as well as EngagingPlans, a place-based, interactive Web site package for planning projects. He designs effective online engagement projects and Social Media strategies for clients, and provides related training when needed. Chris is also founder and publisher of the EngagingCities online magazine, where he writes about trends in Urban Planning and Public Involvement.

Robert Hicks is the Business Development Process Director for the American Medical Association. He received a master’s degree in Business Administration from Roosevelt University in Chicago. He is responsible for managing the AMA’s product development process, particularly focused on the front end of innovation. He has been keenly interested in innovation and collaboration since the 1980’s when he was an improvisational student / actor with Chicago’s Second City. He is a certified Product Development Professional and a Six Sigma Black Belt.

Ingrid Goldstrom has worked for the Center for Mental Health Services (CMHS), Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services, since its inception in 1993 and prior to that for the National Institute of Mental Health. Over her 30 plus year career, she has conducted research, developed surveys, analyzed data, and published articles about the availability and use of mental health services and supports to children, youth, families, and adult mental health consumers in a wide range of settings. Most recently, with the help of mental health consumers, researchers who are also consumers, mental health consumer organizations and others, she designed and implemented the first national Survey of Mental Health Self Help Groups, Organizations and Consumer Operated Services. Since January 2011, she has been Director of Evaluation of the CMHS Children’s Mental Health Initiative (CMHI), in the Child, Adolescent and Family Branch, where she actively promotes activities engaging youth and young adults in all evaluation activities.

Ellen Manges is a Senior Advisor for EPA’s Office of Solid Waste and Emergency Response (OSWER) and is leading the Community Engagement Initiative. Ellen previously served as a Superfund Project Manager in EPA’s Pacific Southwest office, specializing in the cleanup of groundwater and mining sites. She started her career as an enforcement hydrogeologist for the Pennsylvania Department of Environmental Protection and has also worked as a corporate environmental manager, overseeing cleanup at contaminated sites throughout the U.S. Ellen holds a degree in geology from the University of Pittsburgh and studied public management at Carnegie Mellon University.

Ned Norman is a Colorado native, born and raised in inner city Denver. He has a Bachelor of a Fine Art degree from the School of the Art Institute of Chicago which did little to prepare him for the life of cattle ranching and dry-land farming that he now enjoys on the windswept prairie of Northeast Colorado. He ended up in this predicament after marrying Maret Felzien and following her home to the family farm, which has been in the family for four generations. He has lived on their ranch outside of Sterling, Colorado for sixteen years where he runs a cow/calf herd of approximately ninety Angus cows and helps in the farming of winter wheat and corn.

Ned and his wife became involved in Community Based Practice Research (CBPR) when they joined the Community Advisory Council for the High Plains Research Network at its inception in 2003. This unforeseen adventure gives them a deeply meaningful way to impact the health of their immediate community, while also allowing them to positively influence the way the healthcare providers and researchers interact with their sparse, under-served population. The CBPR work has been not only mentally stimulating, but it has provided opportunities to travel, present at conferences, and publish papers (not that his cows care). When not fixing fences, Ned can be found cycling, gardening, Crossfitting, and posting photos and writings about his pastoral lifestyle on his website: www.road12.com.

Sergio Sanchez is part of the High Plains Research Network Community Advisory Council (HPRN C.A.C). I have lived in Yuma County for the last seventeen years and was born and raised in Colorado Springs, CO. I have managed a hardware store in Yuma County for the last ten years. This is where I have learned an appreciation for helping people, and coming to the C.A.C four years ago was not so hard to do because I am still talking to people about fixing their plumbing. I truly feel the work that is done through HPRN is beneficial to the community and worth the investment of time we all give on the C.A.C. It is a great privilege to work the team from HPRN and the C.A.C.!

Ela Pathak-Sen is a Director at Commotion. Her career spanning over twenty years has been in the private, public and not-for-profit sectors. During this time Ela has been an educator, manager and director leading significant development and change projects. Ela operates from a value base that promotes principles of social justice with a strong commitment to community, wanting to make a difference through honest, open and co-operative working. Ela has delivered success at a local and national level and her experience ranges from local government, the voluntary sector and the National Health Service (NHS). Her work at NICE, developing its Citizens Council, is internationally published, and broke new ground for public involvement in health services. At present Ela is working on developing and delivering quality in mental health NHS services. With years of operational and strategic success she has taken up a directorship in Commotion as a further demonstration of her commitment to organisations who are increasingly realising that profits and success can be married with playing a full part in improving society.

Ela lives in Gloucestershire where she is very involved in the work of the local community. She is a Parish Councillor, has served as a School Governor and has campaigned locally for maintaining ‘excellence’ in education through plurality of provision. She has served as Chair on the Ambulance Trust Patient and Public Involvement Forum and is an active member of the LINk, the local patient involvement forum. For further details of her work please visit www.commotionuk.org.

Atul Shah leads the Healthcare Non-Profit business unit, focused on serving Medical Association, Hospital/Health System, and Government clients. He also supports strategic business development in the Life Sciences industry segment by providing business consulting services and cultivating strategic partners. He brings 20+ years of corporate experience including senior business strategy, sales operations, and business process improvement roles, most recently at SunGard and SAP. Prior to SAP, Atul advised Fortune 500 clients as a management consultant with McKinsey and Co. Atul earned an MBA from the Wharton School, an MS from the University of Southern California, and a BS from Rice University.