- Patient Experience: The biggest thing shaping patient experience is that patient experience now matters, due to satisfaction scores and financial penalties among the largest drivers.
- The Affordable Care Act: Insurance coverage expansion for millions of Americans, particularly those with pre-existing conditions has provided new opportunities for patients to seek care, but the ACA still faces challenges from a newly empowered GOP Congress and Supreme Court cases.
- Electronic Health Records Adoption: More doctors’ offices and hospitals have implemented their EHRs and are learning to use them, offering patients fewer opportunities to give the same demographic information over and over again, although multiple portal sign ins may fill the time.
- Access to Data: The number of pledgee organizations to the ONC’s Blue Button program continues to grow and Meaningful Use requirements that patients have the right to view, download, and transmit their data improves access to medical records and claims data.
- Contributing to Data: Whether you wear a wearable activity tracker on your bracelet, belt, or bra, patient generated health data (PGHD) is expanding the scope of what is considered health data by quantifying the 99% of our lives spent outside the doctor’s office.
- Framework for Big Data: Lots of “little” PGHD quickly becomes Big Data with the potential to revolutionize research, creating an active, adaptive learning health system once there is greater consensus on issues of privacy, security, and consent.
- Personalized Medicine: The realization that Big Data and genomic-based medicine are interdependent, each needed to facilitate personalized treatment delivering precision therapeutics trained on biomarkers and individualized care based on analytics.
- Defining interoperability: All this data stays data, rather than knowledge, and actionable information unless it allows care to be connected seamlessly, following the patient in a physician and practice-agnostic manner rather than captured in hospital system silos.
- Telemedicine and Retail Clinics: Bringing care to the patients whether around the corner at the drugstore, an urgent clinic, or through video consult, provides substance to concepts like access and convenience.
- Cost information: The advent of higher co-pays, deductibles, directly paid premiums, and shifts in the conversation to value in healthcare creates the demand for transparency in the cost and price of tests, procedures, and services.
- Expanding roles of nurses, PAs, NPs: As the medical complexity of patients, as well as the recognition of the behavioral, literacy, and other challenges creating barriers to patients co-developing, understanding, and implementing prevention and care plans and achieving goals for which medical practices are accountable, the role of non-physician clinicians will continue to expand.
- Online Patient Platforms: Online platforms and communities provide 24/7 information, support, and experience comparisons heretofore found only approximated in live support groups or phone hotlines.
- Research & Drug Development: Patient advocacy organizations are taking a more proactive role in developing research agenda, pulling together research consortia, funding targeted drug development through venture philanthropy models, and redefining risk/benefit and other determinants of the drug approval process.
- The Patient Voice: New positions in federal agencies, on medical boards and committees, and in hospital councils mark the transition from patients simply having a voice, but having a vote in essential matters shaping healthcare.
- Relationship with Doctors: The doctor-patient relationship is stressed, stretched, and frayed by all of the above, but more important than ever for the integration of scientific, clinical, and social information into expert counsel, deft surgical technique, and partnership in healing.
Posts Tagged ‘health information technology’
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?
I am privileged to have been invited to speak at two conferences this week to lend the patient perspective to panels on the future of health information technology. Kudos to each meeting planner and moderator who prevailed upon their colleagues to include a patient as an active participant in the thoughtleadership and agenda setting that occurs during these meetings, shaping the perspective of attendees across stakeholder segments and planting the seeds of what will bloom into policy and regulation in public and private sectors.
In preparation, I’d love to share my initial thoughts with you, Dear Reader, and ask for your suggestions for my remarks.
I see the essential question as: What do patients want from HIT? (EMRs, EHRs, PHRs)
My answer has seven principles:
Comprehensiveness: An electronic medical record should aggregate all my information across time, specialties, and institutions/practices. A record that does not hold my historical records from all my doctors no matter where I was treated can be misleading to the point of peril.
Accuracy: The information must be correct to be useful. And please make sure my record only holds conditions, lab results, notes, and images that actually belong to me.
Priority: My ideal EMR would highlight the important information in my record for my physician, organizing and alerting her to key issues, new results, missing information. Simply distinguishing between conditions successfully treated in the past from ongoing conditions would be a step up from some current offerings.
Safety: I was thrilled to see the new barcode scanners at my local hospital reducing potential medical errors by checking patient identification bracelets against each medication before administration. Checking for drug interactions, allergies, avoiding overdosing are all important abilities for HIT solutions.
Efficiency: I could spend all night listing ways that the average physician office can be less disorganized. Tops on my wish list are the functionality to send lab results, e-prescribe, schedule appointments, send reminders, instructions for procedures, and orders for bloodwork. I’m sure many of you would have guessed that my most pressing desire would be to be able to contact my doctor by email. While that would be nice, I am so much more interested in my doctors emailing and coordinating my care with each other before they get around to talking with me.
Privacy: There is a spectrum of comfort level with sharing and release of even seemingly innocuous personal health information. In general I believe that most patients would like to have systems that facilitate appropriate sharing of information for purposes of treatment, more individual or consented release of information (even deidentified) for research purposes, and are concerned about discrimination in employment and other settings if information is made public.
Quality: HIT contributions to quality are predicated on everything listed above. One additional significant way that EMRs can improve quality of healthcare delivered is to accelerate the translation of new science, guidelines, or regulatory information to healthcare practitioners.
As a patient, a decidedly non-techie patient, unless you involve me throughout development of health information systems and keep a laser focus on the practicalities of care and research your vast expenditures of time and resources may all be for naught. You can build it, but I may not come. Thanks for finally asking what is meaningful use to me.
The 6th Annual World Healthcare Innovation and Technology Congress
Preconference to the American Academy of Nursing’s 37th Annual Meeting and Conference Transforming Nursing through Informatics and technology: Implications for Practice, Education & Policy.