HIT Megatrend: Patients will have Instant, Complete, Unfettered Access to their Medical Records

Healthcare Needs Help On Transparency

(from Information Week - Posted by Chris Murphy on Thursday Jul 14th at 6:11pm)
Dr. Neil Calman wrapped up Tuesday's InformationWeek Healthcare IT Leadership Forum in New York City with a few predictions, including one portending radical change in people’s access to their health records.
He started with the big picture. "If there's one thing that's going to revolutionize healthcare--whether it's IT, ACOs, any aspect of health reform--what you're going to see is patients taking back healthcare from their providers," said Dr. Calman, a physician who is CEO and cofounder of the Institute for Family Health, which runs 17 health centers in the Bronx, Manhattan, and the mid-Hudson Valley in New York State.

Then Dr. Calman got more specific, including one prediction destined to raise some blood pressure:

"You're going to see patients want complete and unfettered access to their medical records. Forget all this about where we're going to keep the data to ourselves for seven days before it's released to patients, or we're going to create models of abstracted data to give to people. They will have total and complete, instant access to their medical information, whenever, in multiple formats, however they want it."

Each of those modifiers -- complete, unfettered, instant -- would rip away a security blanket that healthcare providers and health IT leaders cling to when they start talking about giving patients access to their medical records.

Instant: Some providers give patients access to lab results, but they wait several days so that doctors have time to talk with their patients about the results.

Complete: Should patients be allowed to read their doctors’ notes? To access every lab result? To see images they aren't qualified to assess?

Unfettered: This will mean letting patients have their full health records -- and not just through a hospital's sanitized portal, but as a raw download they can take with them, Dr. Calman predicted. And they'll have to offer a means for the patient to make comments, or corrections in places where they think the information is wrong, he said. Dr. Calman's fellow panelist, Karen Marhefka, associate CIO for UMass Memorial Healthcare, said giving patients the ability to comment on records was a concern when UMass Memorial assessed vendors for its planned patient portal. Its lawyers advised against allowing other sources into the providers' clinical data, even if comments could be identified as coming from the patient.

Dr. Calman predicted that every major electronic health record system or portal will soon allow patient input, and that it shouldn't be controversial. "Every single thing we do in medicine depends on what the patient told us," he said. "… The subjective part of every progress note is us writing down what the patient told us. We don't have any way of independently verifying it. But all of a sudden, when the patient can write it themselves, it becomes something the lawyers are all freaked out about. Anyway, these are the transformations that are going to take place. They just change the way we think about everything in healthcare."Some 15,000 people now use the Institute of Family Health's portal to view records, Dr. Calman said. But he predicted it won't be long until patients expect to get their records in a downloadable form of their choosing--and that HIPAA and other regulations will be amended to give patients that kind of portable access to their records.

Concerns that patients will misinterpret lab results are legitimate. And letting patients add their own comments or data to their health records does raise some new legal liability questions. But health IT leaders and their clinical peers shouldn't waste their time trying to stop this transparency movement and instead must pour their energy and intellects into coming up with workable solutions. (And there was plenty of that in evidence at the forum.)

Concerned that a patient will misunderstand a test result? Health providers will need to arm that patient beforehand with information about what the test's looking for, and where to get more information about it. They'll need to push EHR vendors to build more such links into their products -- links to reliable data sources, right from an EHR portal.

Giving people access to their medical records is closely related to another phenomenon: people turning to Google or Facebook as soon as they get a diagnosis. Anyone who has done that knows you're likely to read a lot of worst-case scenarios and quackery, and can understand why Debra Wolf, a professor of nursing at Slippery Rock University, says that social media "frightens me to death."

People are "going out to find patients like themselves," said Wolfe, in an earlier discussion at the InformationWeek Healthcare Forum. "What frightens me is they don't know how to safely evaluate a website."

Noteworthy is the fact that Wolfe is looking for ways providers are helping patients get better information, not hoping to cut off access. At some hospitals, when nurses are discharging patients, they’ve been trained to ask, "Are you using a website for health information?" and offer tools to assess a site's quality and reliable sites that people might consider using. People will inevitably look to the Web and social sources for healthcare insights, so "we need to meet them out there," Wolfe said.

Same goes for people's digital health records. As patients demand access, health IT leaders will need to focus on making that experience valuable, not getting in the way.

The Teaching Health Center: A Great Program Threatened by Republican Shortsightedness

After decades of concern for the deep and worsening crisis in our country due to a shortage of primary care physicians, the Obama administration proposed - and passed as part of the health reform bill, a program to directly fund health centers for the training of primary care physicians. Combining the longstanding committment to excellence in primary care with the social committment of the primary care providers that practice in community health centers, the idea of using this successful model to train a new generation of primary care providers was brilliant. Directly funding these programs was essential in that programs funded through hospitals often direct large portions of the training to the inpatient setting to extract more inpatient service from the residents in training. But the model, like other important parts of the health reform legislation is under attack.

H.R. 1216, authored by Congressman Brett Guthrie (R-KY), rescinds the unobligated portion of the $230 million in total mandatory funding available to support Teaching Health Centers (THCs) for FY2011-FY2015. This bill would make the program subject to the annual appropriations process rather than committing the $46 million per year for FY2012-FY2015 in the health reform legislation to fund Teaching Health Center activities.

This year HRSA announced 11 THC grantees, of which 9 are community health centers with our own Institute for Family Health's Kingston Family Practice among them. Funding this year through this program will support the expansion of our Kingston rural residency by 12 residents. The residents will train along side our dedicated primary care physicians - all practicing in medically underserved communities. 6 of these residents will be training in our remote rural center in Ellenville, New York, (pictured below) where they will learn what rural medicine is really like, and, upon graduation, will become part of a cadre of physicians trained to practice in parts of the country where there are few if any primary care services.

If enacted into law, H.R. 1216 will make it challenging for us and the other 10 programs that have already made the decision to participate in this program based on a promise of continuous funding. The new legislatiion being proposed means that the programs would have to fight for limited discretionary funding each year. The National Association of Community Health Centers has said "In this difficult budget climate and with House Republicans reluctant to support the implementation of health reform, despite clear statements by Energy and Commerce Members on both sides of the aisle that this legislation advances a worthy goal of training more primary care physicians, if H.R. 1216 were to become law it puts the new THC grantees future funding in jeopardy."


We need to do everything we can to support the continued funding of Teaching Health Centers. The primary care shortage is real and even in its first year, substantial increases in primary care training will be achieved through this program. Let's keep a good thing going!

ACOs and Federally Qualified Health Centers: A Lost Opportunity to Transform the Health Care of America’s Most Needy?

As our Nation struggles with the troublesome duet of embarrassingly poor health outcomes and seemingly unstoppable escalations in health care costs, a model has emerged with promise to blaze our way out of this quagmire. And unlike many other advancements in medicine, the first beneficiaries of this model are America’s most needy residents. The model, the Federally Qualified Community Health Center, incorporates almost every aspect of what health care experts believe are the fundamental characteristics of an advanced model of health care organization. Strangely, unless action is taken immediately, that model will be overrun by the implementation of Accountable Care Organizations – or ACOs – when ACOs have been developed to accomplish many of the same goals. Here’s what is happening…..

The Medicare regulations for ACOs were released on March 31, 2011 in draft for public comment. In brief, ACOs are meant to establish a financing system where payment enhancements are made to the ACO, and then to the providers, based on achieving specific health care outcomes and reducing (or in some cases stopping the escalation of) health care costs. This is achieved by assigning patients to ACOs based on their historical place of care and assigning cost predictions based on their historical utilization of health services and other health-related characteristics. So everyone – or almost everyone – wants to be an ACO so they can get the financial rewards from their efforts to improve care for their patients and reduce overall health care costs. In New York City, hospitals, medical groups and FQHCs have been planning their ACO strategy since the legislation outlining the goal of ACOs was passed last year in the health reform bill. Yet to the shock of the FQHC community, they were determined, along with Rural Health Centers (RHCs) and some others, to be ineligible to sponsor an ACO.

The implications of this will have enormous, negative impact on the future of FQHCs. To understand this, one needs to envision the advanced model that FQHCs have been developing over the past decade. To start with, they are governed – not just advised – by a board of directors that is made up of a majority of the health centers users. They are built in the community, governed by the community and therefore, serve as a model of how health care providers must be responsive to the needs of those they care for. They have been early adopters of electronic medical records, have been achieving certification as Medical Homes at a blinding rate (the highest recognition a primary care provider can achieve today). They have expanded hours to expand access, provide multilingual care where appropriate, and often integrate chronic disease management, mental health and dental services in one location. They engage networks of specialists to care for their patients – even though 1/3 of the patients they serve nationally lack health insurance. In short, they are the model for what everyone in the U.S. needs. So what is the issue?

ACOs will control the flow of funds for improved care and reduced costs and to insure that the benefits of these added payments accrue to those who have invested in the formation of advanced delivery systems, they must be in a position to control the distribution of these funds. We have always said that a rational system of care is built around a strong foundation of primary care – the FQHC. With hospitals and multispecialty groups in control, the same power relationships that exist now will exist in the future and what is worse – the same model of care and the same catastrophic economic results. We cannot afford to let this happen. The main question at stake here is whether we want hospital controlled ACOs sitting at the center of these new models, struggling to make up for the falling volumes of high-cost services they provide by fighting over market share with other hospitals, whether we want multispecialty group practices at the center of the ACO model with their frequent overrepresentation of specialists and underrepresentation of primary care or whether we want primary care as the ACO’s core – providing a rationally constructed system where the training of primary care practitioners in preventive care, care coordination and chronic disease management provides the foundation for improving quality and reducing cost. We all know what we need to do!

The elimination of FQHCs from the list of eligible ACO sponsors seems to result from a technical issue but it is hard to imagine that a technical work-around could not have been developed by CMS before the release of the draft regulations. The technical problem is that FQHCs are required by CMS to bill Medicare differently than practitioners in private practices bill. FQHCs do not use HCPCS codes to indicate the type and level of procedure done and they do not indicate the specific doctor who saw the patient as the claim form has only a place to indicate the clinic provider number. Because of this historical method, CMS claims the inability to collect baseline data back 3 years as they propose to do and the inability to attribute care to an individual provider. But for those FQHCs that choose to sponsor an ACO, this data is retrievable through a review of the medical records that contain this information. For those on electronic health records, this data could be extracted electronically. For those whose records are still on paper, a sampling methodology could be developed. Claims could be reprocessed for qualifying Medicare patients – those that CMS tells the center might be a candidate for an ACO by virtue of the FQHC providing a plurality of visits to the individual patient. The reprocessing would not effect payment but merely provide the needed baseline data for these patients. I am sure there are other solutions as well – and they need to be developed now.

The country needs FQHC’s as the sponsor and integrator of ACOs – especially as more uninsured patients achieve coverage through health reform in the ensuing years. ACOs sponsored by FQHCs would be based in a system with the most sophisticated primary care delivered in a fashion that by its very nature treats patients in order to improve their health outcomes and reduce their costs of care. We need to advocate quickly and powerfully that FQHCs be included as potential leaders of ACOs, in a position to insure that the distribution of funds through the proposed shared savings models is done in a manner that preferentially supports primary care.

ACOs and Population Health - It's the Denominator, Stupid !

ACOs or Accountable Care Organizations were created by the health reform legislation proposed by President Obama and passed by the legislature one year ago. They are the Nation's new hope in reorganizing the financing (and, it is hoped, the delivery) of health care to support improved outcomes. Patients are not required to belong to an ACO and the ACO does not restrict the patient's access to any caregiver they choose. The ACO is, however, incentivized financially to help the patient organize their health care to achieve a better outcome and thus, save the health care system money. The money saved, in one model being proposed, is then shared between the payer (the insurance company or government in the majority of cases) and the provider (the ACO).

Now that the Medicare regulations have been proposed (by CMS on 3-31-11) it is clear that the attribution method used to assign patients to an ACO does nothing to encourage a health care provider to reach out to their community to engage new patients. To be in a particular ACO, the patient has to get the plurality of their care with a provider in that ACO. To be paid a premium for that patient's care, the provider must focus on optimizing the care of that patient - definitely a good thing to do.

But if I want to improve the outcomes for people with diabetes in the community, I have to outreach to the community, focusing not just on the patients who are already getting a plurality of care from me, their doctor, but rather on the at-risk patients, patients lost to follow-up, and patients who have scattered and disorganized care - using emergency rooms as their family doctor. Only by reaching those patients who are not regularly in the care of a given provider can we achieve better outcomes at a community level.

The problem is not unique to ACOs. All quality improvement programs, rewards for doctors to improve the care of their patients and all quality recognition programs for providers focus on improving the care of patients we already see. This is surely important as doctors everywhere give suboptimal care - usually missing needed preventive health care interventions and focusing on acute care needs. But to improve population health we must reach out to those who do not have a regular source of primary health care.

To accomplish this we need to change the entire process of quality reporting and add some community based outcome measures into the expanding list of measures that are used to evaluate the work of physicians. As we move our patients into ACOs, we must be sure to simultaneously increase our focus outside of our practices and make sure that we engage people not currently in organized primary care systems.

As we develop quality reports we should run them all in two ways. First, we should run them to assess the quality of care we are giving to the patients who have committed their care to us - those who, for example, have been to see us at least twice in the past year. Second, we should run our quality reports using, as a denominator, any patient who has ever been into our health center with the condition being evaluated. This will measure how well we do with patient engagement, how well we are doing with outreach to those lost to follow-up and will encourage patients who have dropped out of care, to re-engage. Even if we do not have the resources to do frank community outreach, efforts to reach this group of patients will help to address those who are not in care and will help build our patient base as well. ACOs need to develop a mechanism to support this type of work in our practices, lest they just become another reward for caring for those who are already committed to a source of care.