Posts Tagged ‘epatient’

Precision Medicine Must Be Participatory Medicine

February 25th, 2016

I am honored today to be involved in two healthcare initiatives that are at the same time foundational and cutting edge.

As a patient, particularly one active in the digital space, there is no greater role model and sherpa than Dave DeBronkart, better known around the world as epatient Dave. Recently I was asked to take on the role of co-chair of the Society for Participatory Medicine, a role founded by Dave. I certainly will dedicate my whole heart and best efforts to represent and advance the principles of participatory medicine in healthcare to create a system that works better for both patients and the clinicians we partner with to live our fullest lives. Dave’s gracious and generous announcement can be found here.

That brings me to today’s White House event with President Barack Obama and NIH Director Francis Collins on the next stage of the President’s Precision Medicine Initiative. Representing patients in my new role as Chair of the Society of Participatory Medicine, as a Board member of the Personalized Medicine Coalition, and as president and CEO of the Global Liver Institute, my singular message is that patients are not just participants in research or the necessary transformation of our healthcare infrastucture and systems, but essential partners. Dr. Collins statement and livestream of the White House summit can be found below.

Later today, NIH Director Francis Collins will join President Obama at a special White House event to recognize the efforts of federal agencies, companies, and non-profit groups to advance precision medicine. You are invited to watch the event live beginning at 10 am ET:

NIH is driving major components of the President’s Precision Medicine Initiative (PMI), including the PMI Cohort Program, a landmark longitudinal research study of one million or more U.S. volunteers. To coincide with today’s White House summit, Dr. Collins has issued a statement on new developments in preparation for launching the cohort in 2016. To achieve our goal of enrolling 79,000 cohort participants by the end of 2016, we have taken several innovative actions this month, including announcing initial funding awards. We hope you’ll take a moment to read the statement.

Best Wishes, The NIH PMI team


Meet Donna Cryer, new co-chair of SPM

The 5 Myths of Patient Engagement with HIT

April 18th, 2011

The remarks below are a distillation of my presentation at the April 14, 2011 Patients as Partners in Care: Engaging Patients through Health IT event at the National Press Club hosted by RTI International. I was privileged to share the panel with Dr. Edward Glynn, Ambulatory Medical Director of Informatics, Bon Secours Health System; Lygeia Ricciardi, the 1st senior advisor for Consumer e-health, Office of the National Coordinator, Health & Human Services; Ann Bartlett, a patient and brilliant diabetes blogger for Health Central; Drs. Jonathan Wald and Douglas Kamerow, both of RTI International.

Thank yous to @CindyThroop now at RTI for the invitation, @ReginaHolliday for her real-time artistry, and @HITgreg from Clinovations for live-tweeting these concepts.

Myth One: “Potato/Patato”
The most fundamental myth when discussing patient engagement is assuming that patients and consumers are interchangeable when asking the question what a segment of the population wants from HIT. As I described in a previous post Consumers vs. Patients, the needs, preferences, and intensity varies with frequency of interaction with the healthcare system among other factors. Allow me to use the following analogy. What do you want from a camera? If you are Annie Lebovitz you’ll make a very detailed request involving aperture, shutter speed, lens exchangability, etc. If you ask me, a person who takes perhaps 5 photos a year that never seem to make it out of my computer, I would say that any old thing would do or really not contribute much to the discussion. Likewise, the input from experienced patients, those with chronic diseases whose lives depend on accurate, complete and timely exchange of data between and with their healthcare providers is an entirely different from the input of feedback of consumers or people with more limited needs. You only need an HIT solution if you have a problem.

Myth Two: “If we build it they will come”
Most HIT vendors have a field of dreams mentality, “If we build it they will come”; making no attempt at patient engagement in the design of HIT systems, or mistakenly trying to get input on technical aspects rather than end user experience and functionality goals.  Vendors and health system purchasers are now either frustrated with patients for not fully utilizing the available portals or tools, or are scrambling to start consumer engagement initiatives, usually again without having patients involved in designing the initiatives.  Meaningful engagement leads to meaningful use.

Myth Three: “Just say no”
A very pervasive myth is that patients are only concerned about data privacy and are opposed to sharing of data. The consequence of this erroneous assumption is that patients are not afforded the rights to manage their data and affirmatively select their privacy options, for fear that the population health, research and other benefits of using aggregated deidentified data will be lost. Two points – (1) patient care about many things other than privacy, and different patients have difference privacy preferences. Patients also care about accuracy, convenience, interoperability, safety, efficiency, priority and quality. (See What Patients Want from HIT). (2) It astounds me that there has not been any large scale educational campaign to the public or through patient advocacy organizations to educate on the potential and promise of HIT are, so that when patients are confronted with the choice to share information, they understand the implications.

Myth Four: “Look but don’t touch”
I applaud those institutions  that have set up a patient portal or otherwise allowed patients access to view their EMR either in whole or in part. However, as any patient who has looked at their records can tell you there are often inaccuracies, gaps, or redundancies that make the record misleading or downright dangerous. Additionally there is a wealth of patient generated data from mobile apps, diagnostic devices, and old-fashioned patient self-management notes that can potential inform care that never enters the formal EMR. It seems to me that that position that provider controlled EMRs with no mechanism for patients to enter or alter data are the only way to maintain data integrity misses a huge opportunity to harness patients as partners in correcting information and ensuring that all relevant information is in fact captured.

Myth Five: “It’s not for you”
Just as the whole notion of e-patient activism has come under fire for being the domain of only an elite segment of tech-savvy individuals, many claim that HIT does not serve low income or minority populations. Organizations such as the National Health IT Collaborative for the Underserved, One Economy and other are making sure that the digital divide does not carry over into the health arena. Moreover, capitalizing on technology like cellphones, already enjoying a high penetration in communities, health campaigns like Text4Baby are proving highly successful. Early data from a Morehouse School of Medicine study E-Healthy Strides Application© for Interactive consumer driven diabetes self-management sponsored by the Microsoft ™ Be Well Initiative demonstrate an opportunity to successfully overcome barriers to HIT use among African American patients.

What other misplaced or misleading assumptions do YOU think are frequently made about patients’ views and potential for engagement with HIT?

Great Expectations

January 3rd, 2011

Happy New Year!

Nourished by time, quiet, and a flurry of emails on the new listserv for the Society for Participatory Medicine, the December holiday break allowed me to be thoughtful about everything that transpired in 2010 and what direction I felt called to take in 2011.

Highlights of the year include:

  • @epatientdave embracing me as part of the epatient and participatory medicine movement, especially after we both spoke at the National Library of Medicine conference
  • @reginaholliday opening my mind by so well embodying the concept of bringing all your talents to the table and designing one’s own model advocacy
  • @trishatorrey for mentoring by modeling
  • @tedeytan for giving me the confidence to use my authentic voice
  • @lygeia for sharing the platform (literally and figuratively)
  • @clinovations for including me and @cryerhealth in your brilliant business vision
  • Attending the E-patient Connections Conference was like stepping through the looking glass uniting my virtual and physical worlds. I left forever changed.

The new year is a perfect fulcrum for change.   Two particular changes stand out . . .

1.       I realize that it is impossible and perhaps not as desirable as I had originally thought to distinguish between my DCpatient (personal) and Donna Cryer (professional) personas. Each powers the other.

2.       My expectations of the healthcare system and the care I receive have been elevated. Now knowing what is possible in terms of team collaboration, information sharing, and operational efficiency I am ever more impatient for the reality of my care to rise to that ideal.

So I have great expectations in 2011 for working with all who read this to create the patient and family-centered wellness and healthcare delivery system of our imaginations.

Be well. Be joyful. Be Diligent. Be kind. And Believe.



Epatient Experts

September 30th, 2010

Having spent the past week participating in a workshop for FDA patient representatives which included sessions on safety analysis and pharmacokinetics, giving a presentation on ways that e-patients can advance clinical research at the American Academy for the Advancement of Science, and being inspired by the E-Patient Connections conference in Philadelphia, I admit to being a bit tweaked at being told in ENT surgeon, Martin Young’s blog post “Are E-patients Experts in Their Own Diseases?” that I have no expertise to offer.  I agree with the central point, particularly after a long conversation with my physician-husband, that patient bloggers should not make definitive recommendations about individual treatments for individual patients, but would be better off couching their remarks as based on whatever experience they have and instead offering key questions to raise or processing for evaluating options.  However, I’d like to make two points (1) the case for e-patient expertise and (2) why patients turn to e-patient bloggers in the 1st place.

The case for e-patient expertise.

Not all patients who go online are e-patients or purport to be experts in any form or fashion.  They are simply seeking information to help them make sense of some health issue intruding into their everyday lives.  There is a burgeoning cohort of patients, however, who not only manage their own conditions in great detail, but read scientific journals, attend medical conferences, and online and off interact with hundreds if not thousands of patients (and often physicians).  Wego Health does a great job of describing the depth and breadth of experience of this small percentage of health activists.  To dismiss this group as simply being experts on themselves is shortsighted.  They may not have the clinical expertise of a top physician thoughtleader but they have a range of insights and expertise in the disease state, in the field,  and are often more well-rounded and informed than an average MD in one practice setting.   I’d love the opportunity for CPE – continuing patient education – alongside CME.  While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.

Why patients turn to e-patient bloggers in the 1st place

I think we can all agree that the ideal scenario is for patients is to have a relationship with a highly-knowledgeable physician, or team of physicians who work collaboratively, who has the time to respectfully listen to all of our concerns and issues, ask probing questions, conduct comprehensive exams, order the right tests, and feed back the diagnostic information in terms we can understand, in concepts we can buy into, and translate into treatment plans that work with our lifestyles and values. Few patients have that.  Not all of us can have @DrDannySands or @tedeytan as our physicians, unfortunately. Nor does the current healthcare “system” support physicians who would love to practice this way.

Too many patients feel rushed, dismissed, patronized, and confused.  They return home asking themselves, “what did that mean?” and “what do I do next?”  Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion.  That’s when the online search begins for clinical definitions, symptoms, treatment options, but more importantly someone to help make sense of it all and help a patient figure out what all this information can mean for them and their lives.  E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal.  Doctors you created this gap. I’d be happy to lay not my laptop if you would fill it.

Excellent posts on the subect by @RAwarrior