BLOG POST | Elina Alterman | 04.16.13
Why Health IT is Truly the Cat’s Meow
Those of us who work in the health IT world spend our days analyzing policies, creating advocacy strategies, and talking about meaningful use criteria, quality improvement, and care coordination till we’re blue in the face. But how does that play out when we leave the office? More often than not, we bring our work home.
I am the sole caregiver to Lorelai and a member of Betty’s1 care team. I have been in the caretaking role with both Lorelai and Betty for about five years. Really, I’m the secondary caregiver to Betty — if the primary caregiver is unavailable for any given reason, the job falls to me.
Lorelai and Betty have similar health histories. Both have chronic conditions that require them to take a variety of medications on a specific schedule. Both experience side effects from their respective medications that require monitoring and management. Both have dietary restrictions and weight management issues that negatively affect their health. And most importantly, neither is able to speak for herself and represent herself during encounters with the health care system.
Three years ago, I took Lorelai to a new primary care provider, who was great. What really amazed me though, was the online patient portal that the office provided. Not only did the office staff tell me about it when I was filling out paperwork, but they immediately sent me an email with the link to the portal and a more detailed explanation of the portal’s services. The portal was private and secure and would help me manage Lorelai’s health by allowing me to view and download her health records, request an appointment, refill her prescriptions, search the practice’s extensive health library, and access both her medication schedule and vaccination history. What’s more, the portal was bi-directional, meaning that I could edit any incorrect information, upload a picture of Lorelai so the staff could recognize her and correctly identify her, and email myself medication reminders.
Now let’s compare Betty’s situation at that same point in time. Though Betty sees a variety of health care providers, three years ago, none of them had online patient portals. Betty, her primary caregiver, and I had to keep track of her medications on a piece of paper. I can’t tell you how many times we argued with her doctors because her prescriptions were sent incorrectly or weren't ready when she needed them. When Betty got hit by a car and broke her leg, the ER didn't notify her primary care provider — we did. And when Betty needed to travel internationally and wanted to bring a copy of her medical records with her in case of an emergency, her doctors resisted so vehemently and took so long to comply that we had to pick up the records on our way to the airport.
Now here’s the kicker: Betty is my grandmother. Lorelai is my cat.
Three years ago, my cat’s veterinarian offered a secure online portal that made my role as the person responsible for her health easier. However, none of the providers treating my 80-something year old grandmother, who doesn't speak English and is fully dependent on our family, provided that convenience.
Luckily, meaningful use is changing all of that. Since my grandmother is a Medicare recipient, my father and I were able — with my grandmother’s permission — to download her health records and print a copy for my grandmother in case she has a medical emergency and goes to the hospital without us. Over Christmas break, we downloaded the iBlueButton app that allowed my father and me to have my grandmother’s medical records and medication schedule on our smartphones in a clear, organized fashion. And since my grandmother’s prescriptions are now filled electronically, we no longer have screaming matches with her doctors or pharmacists — a relief for all parties involved.
We’re all caregivers — we take care of our parents, grandparents, siblings, significant others, friends, pets, and — let’s not forget — ourselves. And we’re all busy and we’re all human — we forget things, we get overwhelmed, and we make mistakes. Meaningful use is helping to make being a caregiver more manageable and easier. The health care system should afford the same benefits to my grandmother and me as it does to my cat, and now, thanks to meaningful use, it finally is.
1 Names have been changed.
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BLOG POST | Elina Alterman | 03.29.13
Meaningful Use March Madness: SO/GI or Bust!
Welcome to the final installment of Meaningful Use March Madness, a series of blog posts refuting frequently-heard arguments about the criteria proposed for the Electronic Health Record “Meaningful Use” Incentive Program.
Background: ONC released a Request for Comment (RFC) in December outlining its current thinking for Stage 3 of Meaningful Use. One recommendation includes requiring that certified EHRs have the functionality to collect sexual orientation and gender identity (SO/GI) data.
The Claim: The collection of SO/GI information has little or no clinical relevance, makes both providers and patients uncomfortable, and is not yet sufficiently standardized.
The Reality: Lesbian, gay, bisexual, and transgender (LGBT) populations experience significant health disparities; Meaningful Use offers an unprecedented opportunity to better understand and begin to address these disparities by making sure EHR systems are able to collect vital SO/GI data.
"LGBT Americans have experienced — and continue to experience — health disparities." That’s what HHS Secretary Sebelius said on Monday in her statement on LGBT Health Awareness Week. Surprised? In fact, LGBT people are more likely than the general population to live in poverty, to be uninsured, and to face barriers to quality health care such as refusals of care, substandard care, and exclusion from health education and outreach efforts. As a result, the LGBT population experiences significant disparities in health indicators such as smoking, obesity, experiences of abuse and violence, mental and behavioral health concerns, and HIV infection.
So how do we address these inequities? Well, the venerable Institute of Medicine (IOM) has said we must begin by understanding the problem and targeting appropriate remedies, and that starts with collecting basic data in clinical settings about sexual orientation and gender identity.
Arguments have been made that the collection of SO/GI information has little to no clinical relevance. We disagree. We can’t possibly expect to provide safe, effective, high-quality care without basic clinical and demographic information.
For example, if a doctor isn’t aware that a patient who presents as male is in fact a transgender man, the provider won’t know to screen the patient for cervical or ovarian cancer. Similarly, if a provider only asks about the husbands or boyfriends of their female patients, a woman’s experience of domestic violence at the hands of her female partner might go undetected. And we are all familiar with the ongoing tragedy of HIV, an epidemic that still disproportionately affects gay and bisexual men and transgender women. Without discussing sexual orientation and gender identity, providers cannot know which HIV prevention materials or services are most relevant for their patients.
Some say the standards for SO/GI data don’t exist. But it doesn’t mean they can’t. We’ve standardized data on quick timelines before, and the rampant health disparities experienced by LGBT individuals make a compelling case for speeding up the work already underway.
We have work to do — no doubt. In addition to creating the standards, we must also develop data collection methods that don’t alarm patients or providers. We had the same experience when it came to collecting race and ethnicity data years ago, but rather than avoiding data collection altogether, we built toolkits to help the job get done and get done right. A recent IOM workshop showcased the great work already done by organizations like Fenway Health to determine the most appropriate and patient-friendly way to ask for and document SO/GI information.
The bottom line is that SO/GI data collection is one of the best tools in our arsenal to identify and reduce LGBT health disparities. These data provide insights into central aspects of LGBT people’s lives that profoundly affect their health, such as how they form and support families, the mental health consequences of discrimination, and the effects of major public health concerns such as smoking and obesity.
The good news is that the Health IT Policy Committee proposed it for Stage 3 of Meaningful Use, which would make EHRs have the basic functionality to capture standardized SO/GI data. While work remains to figure out how to best support providers and patients in the collection of SO/GI data, we have to at least be sure that, as part of Stage 3, EHRs have the capability to collect and store this information so it can be used to improve clinical care.
As we move beyond LGBT Health Awareness Week, we must keep in mind that patient- and family-centered care begins with viewing the "patient" as a person — including his or her sexual orientation and gender identity. It’s high time we put an end to all health disparities; we cannot waste an opportunity to enhance health equity through something as basic as creating the capacity for data collection.
 Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities; Board on the Health of Select Populations; Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People: Building a Foundation for Better Understanding, Washington, DC: National Academies Press, 2011.
 Center for American Progress (CAP) comments on Stage 3 MU RFC.
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BLOG POST | Erin Mackay | 03.22.13
Meaningful Use March Madness: Keep Up the Pace
Welcome to Meaningful Use March Madness, a series of blog posts refuting frequently-heard arguments about the criteria proposed for the Electronic Health Record “Meaningful Use” Incentive Program.
Background: Recently at the Energy & Commerce Health Subcommittee hearing on health IT, members debated the Electronic Health Record (EHR) Incentive Program. Christine Bechtel's testimony highlighted the astounding progress that has been made in two short years, and encouraged Congress to keep up the pace on EHR adoption.
The Claim: Meaningful use is too difficult.
The Reality: There are already hundreds of thousands of providers who have succeeded at meaningful use.
Just a few years ago, we were worried about this program’s success. Many wondered if incentive payments would be even effective drivers of EHR adoption. They doubted whether Eligible Professionals (EPs) — particularly specialists — would be able to achieve meaningful use. CMS officials projected that between 21 and 53 percent of ambulatory care providers would adopt EHRs by 2015.
But as of February of this year — two years before 2015 — CMS data tell us that over 70% of Eligible Professionals have already registered for the program, and nearly 40% have already successfully completed the first phase of either the Medicare or Medicaid incentive program. Hospitals have been even more successful. Almost 85% of Eligible Hospitals have registered for the program and over 70% are meaningful users today.
At the program’s outset, there was concern that specialists would be excluded from what many considered to be the primary-care focused program. To date, providers have had flexibility in choosing among measures best suited to their patient population. This flexibility appears to be working; more than half — 58% — of Medicare EPs receiving payments are specialists.
Furthermore, providers are not alone on this journey. Congress included funds for Regional Extension Centers (RECs) to provide on the ground assistance to doctors adopting and using EHRs. Currently, more than 40 percent of all U.S. primary care doctors are working with 62 RECs to achieve meaningful use. That includes over 60 percent of rural primary care physicians and over 80 percent of federally-qualified health centers and so-called “look-alike organizations.” In fact, a recent GAO report found that eligible professionals receiving assistance from an REC were more likely to achieve meaningful use and receive an incentive payment.
As providers become more comfortable with their EHR systems, these seemingly difficult tasks become easier to achieve. Just look at CMS performance data comparing provider reporting periods of 90 days to a full calendar year. As providers move into having to demonstrate meaningful use for 12 months straight, their workflows become more routine and they perform at a slightly higher level. By the time Stage 3 is in effect, providers will have been using EHRs for at least four years. The enhanced data capture and functionality being considered for the final stage of incentive payments continues a natural evolution of these powerful tools.
Demonstrating meaningful use is challenging — it’s supposed to be. Many of the criteria proposed for the incentive program are ambitious; some may even seem like a real stretch. But that’s the point — to move us beyond the status quo.
Now is not the time to second-guess the potential of this transformational program. Now is the time to push the envelope even further, to capitalize on existing progress towards a patient- and family-centered healthcare system that consumers want and deserve.
 Centers for Medicare and Medicaid, Medicare & Medicaid EHR Incentive Programs, HIT Policy Committee, 3/14/13.
 HealthIT.gov, Healthcare Providers and Health Information Technology Infographic.
 United States Government Accountability Office, Electronic Health Records: Number and Characteristics of Providers Awarded Medicare Incentive Payments for 2011.
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BLOG POST | Erin Mackay | 03.11.13
Meaningful Use March Madness
Welcome to Meaningful Use March Madness, a month of weekly blog posts refuting frequently-heard arguments about the criteria proposed for the Electronic Health Record “Meaningful Use” Incentive Program. Stay tuned all month!
Background: Stage 2 of meaningful use currently holds 5 percent of providers accountable for patients accessing their health information online.
The Claim: Medicare patients are unlikely to take advantage of the ability to view, download, or transmit their health information.
Reality: For the first time, half of seniors (53%) ages 65 and older are using the internet or email.
Technology usage among older adults is booming, undercutting the assumption that Medicare beneficiaries lack the skills and/or desire to leverage online tools to manage their health.
In 2012, for the first time, over half of seniors (53%) ages 65 and older reported using the internet or email. In addition, 69% of these seniors now use a mobile phone (90% of adults ages 50-64). Older Americans are one of the fastest growing groups using social media, on sites like Facebook and LinkedIn. Single seniors are even going online to look for love; AARP dove into the online dating pool late last year, partnering with website HowAboutWe.com.
With statistics like these, it is hard to believe that technologically savvy Medicare beneficiaries won’t take advantage of internetbased tools for the benefit of their health and health care.
Sure, Internet usage is less prevalent among members of the “G.I. Generation” (adults who are currently ages 76 and older). Even if this group is less likely to engage online, there is no question that their families and caregivers see the immediate value of this benefit. More than 65 million people — 29 percent of the U.S. population — spend an average of 20 hours per week providing care for a chronically ill, disabled, or aged family member or loved one during any given year. Twenty-two percent of family caregivers say they need help communicating with physicians. Many call for patients to be more “active” in their healthcare; how can they without the tools to do so?
Ten thousand baby boomers become eligible every day for Medicare — baby boomers accustomed email, Facebook, text messaging, online banking and shopping. They will certainly not only use but demand the same access in health care. Even today, nearly half of Americans access their health information from their doctor 3 times or more a year, and 25% do it 7 times or more a year. With numbers like these, our guess is that within the next 3 years, we’ll not only use online access, we’ll come to rely on it.
 Pew Research Center’s Internet & American Life Project; Older Adults and Internet Use; June 2012
 Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009
 National Alliance for Caregiving and AARP, Caregiving in the U.S.; 2004
“Making IT Meaningful: How Consumers Value and Trust Health IT,” accessed online at
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BLOG POST | Arian Hull | 06.26.12
"A Health Exchange of One"
As an intern at the National Partnership for Women & Families (NPWF) and rising 2nd year law student, the hearing on Patient Generated Health Data (PGHD) provided eye-opening exposure to the need for patients to be active participants in every aspect of their care. The day’s most inspirational speaker was a student living with Crohn’s disease, Nikolai Kirienko, whose knowledge about his own body alerted him to a possible blood clot. When his personal knowledge went unheeded, he revoked his consent to surgery and insisted on testing which revealed the undiagnosed clot. He could have died that day had this information, of which he was the only source, not been shared. His point was simple: PGHD should be incorporated into the information that is seen by every other member of the care team, a sort of electronic “whiteboard” for everyone.
Nikolai advocated that we treat the patient as a “health exchange of one,” by considering them and their caregivers trusted sources of critical information for the entire care team. Emerging trends regarding the collection and use of PGHD in care is encouraging. At the Dartmouth Institute, information about pain level is provided by the patient before their appointment and is incorporated into the patient’s visit. The CHADIS program also uses pre-visit data as a tool for overcoming disparities by using audio aids to work around language and literacy barriers.
As a law student, I also understood the legal issues at play. Some physicians have concerns about liability arising from the inflow of data from multiple new sources, only one of which is patients themselves. The key, according to those actually using this kind of information, is to ensure it is perceived as useful to both the patient and the provider. Defining the appropriate set of data to be collected from patients and their families and making a specific plan for how it can be meaningfully used by both patients and their providers is essential. Additionally, both patients and physicians will need assurance that the information that is shared is protected and sourced appropriately.
PGHD creates a unique opportunity for the transformation of healthcare delivery by enabling patients to be active contributors to their health, informed decision-makers, and invaluable sources of information.
We would love to know your thoughts. Please respond to this post by answering the following questions:
- What kind of information is most important for patients to contribute to their own health records?
- What are some approaches for making sure the information provided by patients and their caregivers is meaningful and usable?
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BLOG POST | Eva Powell | 02.17.12
How do Consumers View Health IT?
We are so excited to be able to share with you the results of an unprecedented study, commissioned to examine consumer views on health IT! There were a number of fascinating findings, including:
- Regardless of the type of record their physician uses, patients see value in EHRs.
- The one in four respondents who have online access to their medical records were even more supportive of health IT than those who do not. They were also more trusting of doctors to protect their privacy.
- Consumers rated EHRs higher than paper records when it comes to giving patients confidence their information is safe, complying with privacy laws, giving patients more control over their health information, earning their trust, and seeing a record of who has accessed their information.
- There are concerns about data breaches and current privacy laws. Three in five respondents whose doctors use EHRs (59 percent) agree that widespread adoption of EHRs will lead to even more personal information being lost or stolen, as do 66 percent of respondents whose doctors use paper records.
- 51% of EHR respondents and 53% of paper respondents believe the privacy of personal medical records and health information is currently not well protected by state and federal laws and organizational practices.
- An oversample of Hispanic adults found that those whose doctors use EHRs were significantly more likely than others to see them as valuable in helping them personally, such as in maintaining a healthy lifestyle, understanding their health conditions and keeping up with their medications. They were also more likely to report having experienced a data breach and to worry that more widespread adoption of EHRs will lead to even more such breaches.
Now that the survey has been released publically, local consumer advocates can use the data to deliver key consumer messages to other stakeholders active in health IT implementation efforts:
- Patients and consumers see genuine value in health IT.
- While consumers definitely have concerns about privacy, consumers also recognize that the technology itself has an important role to play in consumer trust. Therefore, value and privacy should be dual foci of education and engagement efforts.
- Online access to personal health information is a critical facilitator of trust, likely due to its role in promoting transparency. Information exchange initiatives should seize this opportunity to provide patient-facing functionality.
- Consumers have varying perspectives on and expectations of health IT, which means that local initiative leaders should include representatives of subsets of the populations they serve in their planning and decision-making.
Which of these findings are most relevant to your local politics? Are you seeing these perspectives bear out in your work? Share your thoughts and experiences by posting a comment below.
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BLOG POST | Eva Powell | 02.03.12
Consumer Advocates Connect on Inaugural Webinar
We had a fabulous inaugural conversation for state-based consumer advocates working on health IT implementation this week! For those of you who missed it, you can listen to the recording here.
If Monday was any indication, future discussions will be can’t-miss events. We learned a great deal about what kinds of issues state and local consumer advocates are facing, including:
- Engagement in eligibility and enrollment integration with health IT
- Advocating for capability to connect consumers to culturally-competent health materials
- Advocacy in a local effort working to connect social services and clinical services for care coordination
- Direct work with consumers, helping them to understand what health IT is and become comfortable with it
- Advocacy in an effort to connect mental and behavioral health services to clinical services for purposes of care coordination
- Advocacy for consumer-friendly privacy policies governing health information exchange
Our participants had lots of fabulous suggestions for how the National Partnership can support the great work all of you are already doing. In the coming weeks you can look for the following from us:
- A schedule of upcoming discussions. You are encouraged to attend as many as you can!
- Resources for use by state and local advocates to help engage non-consumer stakeholders.
- An inventory of who is working on health IT in the consumer advocate world, and what they are doing.
We here at the National Partnership are SO excited about working with all of you our colleagues in bringing the consumer voice to these critical discussions about health IT!
Please be in touch — we want your feedback about how we can make this site more useful, what resources you need, and what your experiences working on this issue have been. Post a comment here, or send us an email by clicking the link above.
And don’t forget to spread the word about this site and the CPeH community to your fellow consumer advocates working on health IT implementation!
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BLOG POST | Alice Leiter | 01.30.12
Calling All State Advocates
Welcome. We are pleased to introduce this new blog -- the first step in the process of creating an online community for state-level consumer advocates.
It will give us a platform to highlight a number of health IT issues we understand are being tackled at the state and local levels, and, upon successfully promoting and cultivating it, create a robust and informative forum for discussion.
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