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Long-time readers know that my work is going through something of a transition, with one foot in the “grass roots / we ain’t got nothin” world and the other foot in the “BMJ author / Mayo Visiting Professor / NEHI patient engagement fellowship” world. Long-time readers also know I’m nothing if not candid, so while it’s thrilling to be moving into more dignified circles, there’s still a part of me that reacts to news like this by just saying:
OMG: Molly Coye is joining NEHI!
Molly Joel Coye, MD MPH (@MJCoye) has left UCLA’s Global Lab for Innovation in Health and has become NEHI’s new Social Entrepreneur in Residence. Why am I excited? Who is Molly Coye? Well:
- An elected member of the Institute of Medicine, which I often quote, she was a co-author of their most-cited reports on medical safety & quality, To Err is Human and Crossing the Quality Chasm. (This makes her a goddess, on my planet.)
- From NEHI’s announcement: “Dr. Coye has also served as Commissioner of Health for the State of New Jersey, Director of the California State Department of Health Services, and Head of the Division of Public Health Practice at the Johns Hopkins School of Hygiene and Public Health” [and much more]. (And on top of her medical work, she has “an MA in Chinese History from Stanford University, and is the author of two books on China.”)
- From UCLA’s announcement: “Under Dr. Coye’s leadership, the Institute for Innovation and the Global Lab have been tremendously successful and productive. Among the many important projects overseen by Dr. Coye and her team are included the Doximity Colleague Connect pilot, the Zipnosis online diagnosis and treatment service, the Vivify Health Remote Home Monitoring Platform, the Virtual Visits pilot project, the Patient Voice user experience-based design approach to value-based care, and the launch of Real Time Referrals and eConsult.”
- From the iHealthTran blog in 2013: “She received the Information Technology Innovator Award from HealthCare Informatics and was named one of the 25 Most Influential Women in Healthcare by Modern Healthcare Magazine. Elected to the National Academy of Sciences’ Institute of Medicine in 1994, Dr. Coye co-authored two landmark reports on healthcare quality, To Err Is Human and Crossing the Quality Chasm. She also chaired the IOM’s Committee on Access to Insurance for Children, and co-chaired the Committee on Patient Safety Data Standards.”
- Finally, I asked the members of our Society for Participatory Medicine (patients and clinicians) if any of them have first-hand experience with her, and within a few hours got these responses:
- “She is on my ‘good-guys’ list”
- “I’ve worked with her … She is thoughtful, well organized, and pleasant to work with.”
- “Sincere and an extraordinarily diplomatic ambassador.”
- “delightful to work with and an amazingly competent person”
I like innovation, optimism, brains, insight, and practical experience. And as I blogged about NEHI when I first got this fellowship, NEHI is action-oriented – not just a “think” tank, a “think-and-do” tank. They’re about “evidence, action, and policy impact.” Thanks too to the Commonwealth Fund – as the NEHI release says, “Dr. Coye’s work will be supported in part by a grant from The Commonwealth Fund.”
So this will be fun. And productive, I’m sure. Life is good.
This an open invitation to a free event in Washington, Wednesday morning, May 27, sponsored by NEHI, where I have my patient engagement fellowship. Anyone’s welcome, but a key focus is how new insurance payment models will affect cancer patients, so I particularly encourage patient voices, and especially people who are interested in how insurance plans affect patients.
Register here on the NEHI site. (Scroll down on the page.)
From the event page: (remember, this is about payment innovations, not new treatments)
As alternative payment models emerge in areas like oncology, it is critical to explore the impact of these new models on patient access to innovation. The stakes are high for patients, clinicians, innovators, and the system at large.
Join us for a multi-stakeholder roundtable to explore how new payment models will impact patient access to innovation in oncology and what policy actions are needed to sustain innovation.
I’ll have more to say (more background information) about these payment innovations as the day grows closer. One place to start is this 90 minute webinar recording from last August.
This kind of NEHI event is highly interactive. A panel of seven (see agenda page; I’m one) will hold two 75-minute discussions with much Q&A from the audience. Moderator is Tom Hubbard, NEHI’s vice president of policy research – a great guy – very knowledgeable, approachable, and personable.
Why patient presence matters
As I say over and over, “patient needs and perspectives” are now an official priority in healthcare. The Institute of Medicine said it in 2012:
A learning health care system is anchored on patient needs and perspectives, and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
NEHI gets this: You can’t include the patient perspective if patients aren’t there. For years patient advocates have appealed to meeting organizers to have patient voices at the table – not just talked about, but actively in the discussion. If you as a patient, or your organization, is interested in this subject, register and come to this half day event.
There are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.
I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.
Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.
Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!
Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!
For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.
Thank you, NEHI, for your vision, and let’s do this thing!
Part of creating culture change is to publish documents, professional and mass-market, that spread the word about the new view. In addition to my speeches and videos, I do this through articles and books.
For more information, visit the Books page.
- Coming in 2020: Superpatients: Patients who extend science when all other options are gone.
Let Patients Help: A Patient Engagement Handbook with Dr. Danny Sands; introduction by Eric Topol MD; now in nine languages
- Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV kidney cancer – my cancer diary on CaringBridge (excerpts), with later blog posts
- Facing Death – With Hope. An excerpt from Laugh, Sing, and Eat Like a Pig, which the Mayo Clinic Healing Words program asked me to read from when I was Visiting Professor in 2015. Video here.
Book chapters written and co-authored
- Book chapter: “Who Moved My Facts? Patient autonomy and the evolution of infrastructure mean best available knowledge is not where it used to be.” Chapter in A Lifecycle Approach to Knowledge Excellence in Biopharmaceutical Industry, edited by Nuala Calnan, Martin J. Lipa, Paige E. Kane, Jose C. Menezes. June 2017
- Foreword: “The Unfolding Science of Patient Engagement,” in The State of Healthcare – From Challenges to Opportunities published by DNV GL and Sustainia. April 2015.
- Booklet (co-author): Reinventing Health Care: Barriers to Innovation. Aspen Institute, 2012.
Articles in peer reviewed journals
- Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto. JMIR; Vol. 21, No 11 (2019) November
- Prehabilitation can be tricky or empowering. BMJ 2019; 367
- Open access: remember the patients. BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l1545
- Developing and Testing a Personalized, Evidence-Based, Shared Decision-Making Tool for Stent Selection in Percutaneous Coronary Intervention Using a Pre-Post Study Design. Feb. 2019. AHA Journals Circulation: Cardiovascular Quality and Outcomes. Adnan K. Chhatriwalla, MD; Carole Decker, RN, PhD; Elizabeth Gialde, RN, MSN; Delwyn Catley, PhD; Kathy Goggin, PhD; Katie Jaschke, MSN, RN, AGACNP-BC; Philip Jones, MS; Dave deBronkart, SB; Tony Sun, MBA, FACP; John A. Spertus, MD, MPH
- Assessment of US Hospital Compliance With Regulations for Patients’ Requests for Medical Records. October 2018. JAMA Network Open. Carolyn T. Lye, BA; Howard P. Forman, MD, MBA; Ruiyi Gao, BS; Jodi G. Daniel, JD, MPH; Allen L. Hsiao, MD; Marilyn K. Mann, JD; Dave deBronkart, BS; Hugo O. Campos; Harlan M. Krumholtz, MD, SM
- The patient’s voice in the emerging era of participatory medicine. August 2018. Lead article in annual special issue of International Journal of Psychiatry in Medicine. https://doi.org/10.1177/0091217418791461
- Digital health is a culture transformation of traditional healthcare. Sept. 2018. Meskó B, Drobni Z, Bényei É, Gergely B, Győrffy Z. mHealth 2017;3:38. (Acknowledged contributor)
- Beyond restenosis: Patients’ preference for drug eluting or bare metal stents. Qintar M, Chhatriwalla AK, Arnold SV, Tang F, Buchanan DM, Shafiq A, Pokharel Y, deBronkart D, Ashraf JM, Spertus JA.
- “I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Services Research: (2017) 17:529
- The paradigm of patient must evolve: Why a false sense of limited capacity can subvert all attempts at patient involvement. Patient Experience Journal: Vol. 4 : Iss. 2 , Article 2.
- Patient commentary: Empowered patients aren’t belittled by doctors’ titles. Nov. 2015. BMJ 2015;351:h635511/25/2015
- Open Visit Notes: A Patient’s Perspective and Expanding National Experience, with Jan Walker, RN, MBA. Journal of Oncology Practice. May 2015. doi:10.1200/JOP.2015.004366
- From patient centred to people powered: autonomy on the rise. Invited essay, BMJ Patient-Centred Care Spotlight, February 2015.
- How the e-Patient Community Helped Save My Life. Invited essay, British Medical Journal, April 2013. [BMJ 2013;346:f1990]
- Paper: West HJ, deBronkart D, & G Demetri. A New Model: Physician-Patient Collaboration in Online Communities and the Clinical Practice of Oncology. In: Govindan R, ed. 2012 ASCO Educational Book. Alexandria, VA: American Society of Clinical Oncology; 2012;475-479.
Articles in health-related publications and blogs
- Important HIPAA Update: New Penalties – Clinics get $85,000 Fines for NOT Releasing Data to Patients. SolutionReach Blog, 1/8/20
- Can Your Robot Do This?? – Pick Tasks that Can be Solved Today. SolutionReach Blog, 10/8/19
- FHIR on Fire: A New Standard to Make Patient Data More Mobile. SolutionReach 7/9/19
- What Everyone in Healthcare Should Know About Facebook and Data. SolutionReach blog, 4/24/19
- Whose health is it, anyway? Carium blog (on Medium), April 2, 2019
- Consumerism Comes to Healthcare: Listening to Yelp. SolutionReach blog, 1/30/2019
- C’mon, Healthcare – Make it Easier to do the Right Thing! SolutionReach blog, August 2018
- It’s time to flip the script on patient engagement. athena insight, August 2018
- “Keep in touch” – The Hallmark of Good Relationships. SolutionReach blog, June 2018
- Do you blame the receiver if all they hear is noise? EmmiSolutions, October 2017
- Don’t be a passive patient. Future Health Index (Philips), August 2017
- What patients need – and healthcare doesn’t deliver. athena insight, June 2017
- The engaged patient is an anomaly. Let’s fix the paradigm. EngagingPatients.org, April 2017
- The value of sharing data: What healthcare can learn from oncology. Future Health Index, March 2017
- Lessons from Seinfeld: Empower Patients to Look in Their Chart. Health eCareers, December 2016
- Could data make you live longer? Future Health Index (Philips), August 2016
- Cover story: The Patient’s Perspective: Medicine’s New True North. PLAID Journal (People Living with And Inspired by Diabetes), Spring 2016.
- Cover story: Beyond Empowerment: Patients, Paradigms, and Social Movements. Patient Safety & Quality Healthcare magazine. March/April 2016.
- Knowledge is Power. Power to the People! Guest post for Philips Healthcare, 2/5/2016
- “My Health: Upgraded” is a clear vision from a young futurist. BMJ Blog, 9/16/2015
- “Precision medicine” needs patient partnership, with Dr. Zachary Sholom Berger. BMJ Blog, 3/20/2015
- Essay: Social Media is the Profound Change Fueling the e-Patient World. Mayo Clinic Social Media Health Network, 3/20/2015
- Patient Participation: Let Patients Help With Medical Record Quality, Completeness. Invited guest column, iHealthBeat Perspective, Sept 2013.
- The Multidimensional Role of Social Media in Healthcare. ACM Interactions magazine (Association for Computing Machinery), July-August, 2011. (Co-author)
- Who Gets to Define Quality? Society for Particpatory Medicine, March 14, 2011.
- How Patient-Provider Engagement Can Transform Patient Safety. Patient Safety & Quality Healthcare magazine, November 19, 2010.
See also the Media page for interviews and articles in mainstream media (Washington Post, USA Today, Time, etc) covering my thoughts on contemporary topics.
As healthcare progresses, my business is changing: new speech topics, and more advisory projects. This is a two-part video of a new speech last month, at the New England chapter of HIMSS (the big health IT systems society). Finally clients are agreeing that there’s more to talk about than “Dave’s scary cancer story” – most of this speech is information that didn’t exist when I started giving speeches. Predictions are coming true, so new imperatives emerge.
The videos: (Email subscribers, if you can’t see the videos, click the headline to come online.)