New York Times columnist Pauline Chen, MD, recently wrote about whether patients should have easy access to their medical records. Of course, HIPAA guarantees that all patients have the right to access and amend their medical record; however, this is often easier said than done.

Fundamental questions about the value of sharing medical records with patients remain, Chen writes. “Should medical records be shared as interactive documents between patients and physicians? Can transparency work, or will it end up worrying patients, muddling the patient-doctor relationship and adding more work to an already overburdened primary care work force?”

To help answer these questions, several health centers are taking part in a study that examines the effects of providing access to physician notes to patients.  In the study, patients receive an e-mail sending them to a website to view their physician’s notes after the visit and a reminder prior to a follow-up visit that the notes are available for review. The study has more than 100 participating physicians and 25,000 patients. According to lead investigator of the study Jan Walker, RN, finding physicians to participate in the study has been challenging, while finding patients has been much easier. Walker says that many physicians feel overburdened and are worried about the clarity of their notes.

At Kaiser Permanente where I work, we provide HIPAA compliant electronic access for our patients to access their own results of lab values and tests once they have been screened and reviewed by the ordering physician. Our own electronic record also has an interactive component through “e-secure,” which is an HIPAA compliant confidential email communication portal between the physician and the patient.

Since we’ve put this into place, I’ve noticed a markedly enhanced patient satisfaction in their patient-physician relationship. The emails are limited in words allowed and no attachments can be sent by the patients. My own experience is that patients do not “abuse” this email portal and that my care delivery is actually made substantially more efficient rather than playing “phone tag”. The interactions become part of the medical record documenting the care and advice given.  At the present time, however, the patient is still required to submit written authorization for a hard copy of their own electronic health record at Kaiser Permanente.

What do you think of regularly sharing your notes with your patients? Do you think this would have negative or positive outcomes for your patients or yourself?

The HHS Health IT Policy Committee (HIT PC) held its first meeting last week under the direction of (our friend) David Blumenthal, formerly of Partners and Harvard and now Obama’s National Coordinator for health IT in HHS. The HIT PC is going to develop policy recommendations and health IT dollar-distribution strategies for those who show "meaningful use" of an EHR.

That’s $20 billion worth of power theoretically, but only $2 billion of the funding is actually in Blumenthal’s direct oversight. Blumenthal wants to spend at least $300 million training health care workers in how to deploy health IT. He will also deal with privacy insecurity issues, and hire a chief privacy officer; but he seems open to standing up to the bludgeoning he may experience by suggesting a unique patient identifier (UPI) is needed to help track patients in the chronic disease continuum. We strongly agree, David.

The big coming arguments of the HIT PC will be around what the "meaningful use" definition actually means. They have a workgroup to help define that, as well as workgroups on privacy and safety, and another one on interoperability standards. Keep in mind that if your practice isn’t deemed 'meaningful,' you ain't gettin' any money here. It’s worth paying attention to. Believe me, we will not miss those meetings or fail to get involved with the workgroups Blumenthal is forming.

***Image from Flickr (Prasan Naik)*** 

The City of Milan, Italy, is pressing legal charges against current and former Google employees and the company itself for violating the privacy of a teenager with Down Syndrome. Two years ago, someone posted cell phone video of a few teenagers bullying a 17-year-old with Down Syndrome from Turin, Italy. Google pulled the video after receiving complaints, but prosecutors say the company should never have allowed the video in the first place. Google officials contend that the search engine giant is a neutral platform and is not governed by privacy laws.

Our last presentation before wrapping up the 2009 Health System Reform Summit discussed access and patient partnerships, featuring presentations from Darren Willcox of the Coalition to Advance Health Care Reform, Bill Novelli, CEO of AARP, and Helen Darling from the National Business Group on Health. All the speakers supported patients taking more responsibility and becoming more involved in their health and health decisions -- and the increasing trend of this actually happening.

Willcox discussed Safeway’s efforts to get its employees to improve their health through support networks, like a 24-hour hotline, 100 percent coverage for preventive care and lifestyle management programs. Safeway’s efforts paid off – they have been able to stabilize health care costs at the 2005 level. 

Novelli talked about AARP’s health care reform campaign with SEIU and NFIB, called Divided We Fail. This campaign focuses heavily on the patient, stressing that in order for care to be considered “patient-centered,” it must involve the patient in care decisions. This means that patients need to know more about the resources they consume and there must be incentives for physicians and patients to work together to efficiently use health care resources. 

Darling gave statistics from two surveys her group has conducted recently of employees. The survey found that employees want health communications targeted to their needs; employees want to reduce their costs and get more value out of their care; and employees are trying to live healthier. People are more and more willing to take personal responsibility for their health. 

All three of the speakers responded to two controversial issues that they were asked about in the Q & A session. More...

Last week week we released a congratulatory statement on the positive proposals laid out at the Senate Health, Education, Labor and Pensions (HELP) Committee’s Health IT hearing. I’m encouraged by the proactive position HELP is taking on promoting health IT adoption (with proposed big financial backing); we need to continue to encourage Congress and the new administration to support health IT — but, along with firm standards for interoperability. The statement says, "the money Obama's plan puts into the infrastructure will be wasted if interoperability standards are not also put into place." These standards will allow clinicians to access information from multiple sources to help make better informed medical decisions to avoid adverse drug events, and to encourage patients to adhere to evidence-based medication regimens.

More was cooking last week. The Progressive Policy Institute (a Blue-Dog Democrat think tank) also put out a statement promoting health IT investment that included a great deal of ACC policy consideration. With our help that statement did NOT include over-kill privacy protection language -- as first proposed -- that would place barriers in front of most chronic disease management, registries like NCDR, and interoperability. The patient should be able to protect and direct their data, but if requires affirmative authorizations at every step and every time information is exchanged, it can’t realistically occur. Maybe we need to mobilize the profession, along with consumer groups, to develop an “opt-in” unique patient identifier that would make all of this easier for patients who want their information available at the point of care (for life-saving reasons). Those greatly worried about privacy would not need to participate. The recommendations of the ACC Informatics Committee, chaired by Mike Mirro, M.D., F.A.C.C., have provided great input for these documents. [Mike contributed to the Lewin Report this month on health IT ... I encourage you to read and comment on his post.] The e-Health Initiative (we are members) also put out a very positive health IT promotion statement last week which we significantly helped to craft.

More health IT coverage in the blog-o-sphere this week:

• WSJ's Health Blog: E-Prescribing: Green Means Generic, Red Means Pricey Brand
• HealthBlog: Wielding Technology's Wonders to Improve Health in America
  

The buzz in Washington is audible everywhere. The anticipation of major changes in health care and the possibility of real system reform continues to grow.

Peter Orzag, the brilliant economist who headed up CBO (Congressional Budget Office), and who declared earlier this year that fixing health care must be the nation’s biggest overall economic imperative, has accepted the OMB (Office of Management and Budget) job in the White House. I was a bit disappointed about that at first -- CBO is a powerful platform to push for reform and Congress will need sound advice. But Orzag shared with me that he will be charged with looking for ways to reduce unnecessary spending throughout all government agencies to free up more dollars for health care -- something he couldn’t do at CBO. That sounds promising. There is a lot of waste in health care, but there is certainly even more waste in government! Ironically, at the end of the Bush era, government is bigger than it has ever been in history -- so it’s a good source of resources for health reform. Orzag also wants to be in the center of Obama’s planning for health reform. So does everybody else.

Obama -- with some advice from Daschle, Orzag and others -- has also said he wants some of the “stimulus” dollars to go to promote health IT. That IS exciting. There is also a lot of buzz -- we’re helping to foster it -- that the new administration should bite the bullet and set interoperability standards over the objections of industry to promote open data exchanges among all vendors and systems. That would really speed reform activities along. All the IT vendors will object, but we need to do this. There is also talk of using “stimulus” dollars to promote sCHIP expansion. These are encouraging ideas.

Along the lines of HIT reform, note that ACC Presidents Jim Dove and Doug Weaver have suggested on the Hill in multiple venues that the nation also needs to find ways to overcome legitimate privacy concerns and move toward establishing a national patient identifier to promote research, chronic disease management, and quality improvement. There are tough privacy issues to be addressed, but the quality and disease management challenges on the absence of a consistent patient identifier are daunting. ACC is planning meeting with privacy advocates to see if there might be ways to reduce their opposition to a national patient identifier.