Accomplishments since the IHI Forum by Patient Advocates & Activists

Six months after the IHI Forum in December 2010, here are the progress reports from 22 patient advocates and activists. Others have been making significant progress too; these are the 22 who met the next-day deadline.

Beth Boynton: In March 2011 I presented a brand new workshop at NYU Steinhardt's Forum on Theatre for Public Health. The title of it was "Using Improv to Develop Communication & Collaboration Skills in Healthcare Professionals". The purpose was to raise awareness and provide fun teaching methods that address medical errors resulting from poor communication and/or lack of collaboration.

Kathleen Clark: I recently had an article, entitled "The Collaborative Continuum Associated with Adverse Medical Events," published here in the International Journal of Collaborative Practices. I've planned and facilitated several dialogues in the healthcare system in the county in which I live; and I'm moving forward with my book, tentatively entitled "Bringing Healing to Law and Medicine". Lastly, I'm in the process of interviewing for a 3-month Rotary International Peace Fellowship at a university in Bangkok.

Margo Corbett: Forsyth Tech in Winston-Salem is starting two new programs in 2012, one for Patient Advocates and one for Geri-Aides. I will be teaching my course in the PA program and will be teaching the teachers of the Geri-Aide program to teach some of my material, so they can incorporate it throughout their teaching. I have finally made the contacts I've been looking for just yesterday in the Health Insurance Underwriters Association and will be speaking to two of the regional groups. I am participating in Health Fairs at companies in the region and will be doing Lunch & Learns at some of them. My new book, Dear Doctor, Dear Patient, What every doctor and patient wishes the other knew, but never says or asks, is coming out soon.

Ilene Corina: Our work at PULSE of NY has been overwhelmingly successful. We have had advocacy trainings and patient safety seminars, and our events are filled to capacity by community members. We are receiving a grant from Cautious Patient Foundation which will help us grow our Patient Safety Advisory Council and reach even more community. Our visits to hospitals have grown and are advocating for entire families at the bedside.

Dave deBronkart: Two things: A TEDx talk in Holland, and I participated in a debate in Costco Connection magazine about whether patients should look for medical information online.

Jeni Dingman: Took responsibility for informing the Facebook group via more than 100 posts about specific news stories, events, and opportunities to get involved. I've been assisting in efforts to retain Dr. Don Berwick as the head of CMS. PULSE of Colorado and the Pulse of America Coalition for Healthcare Reform both signed on with the Partnership for Patients.

Ken Farbstein: My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, was published in April by Dorland Health's new Professional Patient Advocate Institute. The book uses stories of celebrities, public figures, doctors as patients, and my family to show how to advocate for ill people while partnering with their doctors and nurses. My individual patient advocacy practice, Patient AdvoCare, has been growing.

Carl Flatley: The Sepsis Alliance continues are international awareness campaign, since only 3 out of 10 Americans has heard the word, "sepsis". One of our latest projects is the release and distribution of our Sepsis Emergency video. On July 26, segments of it will air on Rachel Ray along with 3 members of the Sepsis Alliance.

Doug Hall: 1. Completed the design for the PULSE of Florida Patient Safey Services

a. Patient Navigation Services - to find the right physician and facility and care coordination

b. Patient Education Services - basic to comprehensive - one-to-one or one-to-many

c. The Attentive Care Unit - Inpatient Safety Monitoring for safety, comfort and communication

d. Enhanced Post-Discharge Case Management - Better follow-up, fewer re-admissions and better care coordination

e. Adverse Event Disclosure Services for Patients and Disclosure School fr Providers;

2. A Faculty Member for Patient Advocate Webinars by The Professional Patient Advocate Institute PPAI;

3. Created the PULSE Patient Safety Collaborative to encourage sharing of knowledge to help advance grassroots Patient Advocacy; and

4. Expanded the PULSE online Patient Safety Bookstore - now with 2200 books and products.

Carole Hemmelgarn: Completed Master's Degree in Leadership in Patient Safety from University of Illinois Chicago. The past three months I have given 6 talks in various areas of Patient Safety, mostly focusing on the importance of communication and listing to patients, parents, family members, and other assigned advocates.

John James: I've participated in my first meeting of the State of Texas Healthcare Acquired Infection and Patient Adverse Event Panel meeting in Austin. I think this group can make a real difference in patient safety in Texas and could actually give leadership to other states hoping to improve patient safety. I've written six monthly Patient Safety America Newsletters.

Kevin Kavanagh: My most recent publication is "Health care integration: Will physicians lose their voice?" in the Bulletin of the American College of Surgeons. At least two other articles will be published in the medical literature later this year. With 19 others, I submitted a comment on physician's fiduciary responsibility, patient representation, etc., to guide CMS' rule-making on Accountable Care Organizations.

Charles Maclean: I crafted and submitted proposed legislative language on "patient advocacy, wellness, self-responsibility and prevention" to the Oregon Health Care Transformation Task Force. Some of these focus points are being discussed now as part of Oregon health care pending legislation. I conducted the action research resulting in the thought-action stimulus: Patient Advocacy - A Conversation Starter for Health & Health Care Transformation ("From Provider-Centric Fee-for-Service Sickness Care to Patient-Centric Wellness Outcomes Partnership Care Supported By Patient Advocacy as a Shared Right and Responsibility. Includes definitions, self-advocacy, self-education, framing questions, desired outcomes, benefits for health care providers, guiding principles, resources and Appreciative Inquiry action stimulus questions.

Mary Ellen Mannix: The James Matthew Mannix Bill (Pennsylvania) requiring screening for congenital heart defects in all newborns born in birthing facilities and hospitals will be introduced to the Pennsylvania legislature any day now. Senator Daylin Leach (D) is the bill's sponsor! My second book - a guideline to restorative practices/justice in medicine is in the works. I have also held numerous Rattle Wraps, am writing more curriculum for patients & clinicians in the childbirth & maternal health fields, and overall enjoying daily advocacy for moms and their babies through James's Project (and a collaborative presence with The Empowered Patient Coalition).

Karl Maurer: I took back information about IHI to the 15+ members of the Family Advisory Board at Children's Memorial, along with patient safety information. We're going to dedicate at least one meeting a year to patient safety and service excellence in the hospital, and in all our meetings, focus on quality and control. Last night, we the CMH FAB met with the infection control department and reviewed the progress we have made on in-hospital infections - down by 65% since 2005 - and hand washing by staff -95%+, up from 85% in 2005.

Evelyn McKnight: HONOReform Foundation and the Safe Injection Practices Coalition, which includes the CDC, the CDC Foundation and a variety of public and private partners, continues to help lead the One and Only Campaign. HONOReform is building a chapter in Nevada, where it will expand its mission to focus on factors in addition to reuse of needles and syringes that have contributed to the 45+ documented outbreaks in the U.S. over the last 12 years.

Armando Nahum: At the Safe Care Campaign: we are producing a 5 minute video for Patients and/or loved ones in the ICU. "What to expect and how to behave in the ICU environment" will not only educate the public but it will make the caregiver's job a lot easier. The CDC is working with us as consultants with Arjun Srinivasan, MD (Associate Director for Healthcare Associated Infection Prevention Programs, Division of Healthcare Quality Promotion, NCEZID) as the spokesperson.

Dianne Parker: I have testified regularly before our SC Senate Sub-committee on the necessity of removing the Tort Reform coverage for physicians. My story has often been shared with our legislators at their county meetings all over the state. I've been to several states besides my own, spoken to groups of older citizens on Patients Rights - also visited a couple of hospital CEO's with three patients in SC, and some in other states, regarding patient complaints of unsatisfactory care in the ICU for a blind patient, and one who had multiple medical errors.

Mary Ann Peugeot: I participated on the External Review Committee for Picker Institute for grants to be awarded under their Always Events(r) (AE) Initiative. I am continuing as Chair of Vanderbilt's Patient and Family Advisory Council and have also been named to Vanderbilt's Patient Experience Improvement Council where I have been very active. Because of my involvement in projects and activities related to Patient and Family Care at Vanderbilt, I was nominated for a community service award.

Tricia Pil: I continue to blog about patient safety for Lamaze International and posted a piece about the HCAHPS patient satisfaction survey several months ago. I have a letter-to-the-editor at the American Journal of Obstetrics & Gynecology forthcoming (no pub date yet) that provides a critical analysis of an obstetrics patient safety program at a major medical center; this publication is co-authored with fellow IHI PA and healthcare law attorney Kathleen Clark and professional root cause analyst Robert Latino. I completed a class last spring on Lean Six Sigma quality improvement and am working toward official green belt certification. I gave two talks locally on patient safety and medical error in March--one to social workers in health care (Society for Social Work Leadership in Health Care) and the other to quality improvement nurses through the American Society for Quality. I continue to serve on the board of the Pittsburgh Consumer Health Coalition and am delighted to have spearheaded the drive to bring fellow IHI PA Dale Micalizzi to Pittsburgh in August.

Patty Skolnik: Citizens for Patient Safety continues to do presentations nationally regarding The Faces Of Medical Error....From Tears to Transparency: The Story of Michael Skolnik. My husband David has joined me on the road and in the presentations for Q and A. We have also agreed with University of Colorado Hospital to not only do external consumer training but internal staff training for all medical personnel.

Trisha Torrey: Kept nurturing the Every Patient's Advocate network, writing biweekly Thursday emailings of Headlines and Tools for advocates, and organizing webinars. Continued to write and speak on patient empowerment topics, reaching out to patients, advocates, navigators through About.com and Every Patient's Advocate. Was invited for the first time to address providers, both through a series of articles in Physician's Practice Magazine and speaking to two groups of providers through the Alaska Federal Health Care Partnership.