We can listen to the thoughts of the audience as much as we listen to the thoughts of the panelists, and you.

At today’s presentation at WHIT 5.0, I asked every audience member to write down something on a note card about what they heard today about using social media to engage patients and change the health care system. They could write a comment, a question, or just “have a nice day,” as long as they wrote something.              

Unfortunately, we ran out of time to go through these with the panel. Fortunately, the conversation can now continue in cyberspace, because the questions are written down.

Take a look. Answer one, or answer them all in the comments.

I asked every member of the audience to write a question or comment down on a notecard. I’m going to scan those in and allow panelists to answer them online, to continue the conversation.

Here’s where you can find everyone, and thanks for bringing your perspective today:

Holly Potter – ePatient Dave – Regina Holliday

This week’s photograph is a really a web badge, for Healthy People 2020, whose objectives have entered the public comment phase.

As I have written previously, HP2020 includes “exciting new and/or modified objectives” that include access to the Internet, to one’s personal health information, and to one’s health care provider online. I added a public comment on the latter objective.

I think this is a great progression of the Healthy People program of the US Department of Health and Human Services, because I remember Healthy People 2000 – back then it wasn’t envisioned that patients would have internet access to their health care providers and information. As this becomes part of Healthy People 2020, we’ll envision it for our country, and our international colleagues will envision this type of access/empowerment as both essential for good health and a great innovation from our health care system.

Please take the time to review the objective(s) and include your input on a few – I am sure you will find at least one that you are very passionate about.

See how many different aspects of this experience could be improved (security, privacy, confidence, accuracy) if the patient had online access to their results, linked to explanatory health information and interaction with their care team at their convenience.

While the situation is obviously a parody, it seems to have enough elements of truth in it that I wonder if the writer experienced receiving test results recently. Without overanalyzing, I would say that the piece does a great job of showing the impact of disempowerment. Thanks to the 30 Rock team for the great example.

In California, a patient wouldn’t have a choice except to receive the results via telephone or in person, because it’s been illegal since 2002 to share pathology results with patients over the Internet, even if the patient and/or the doctor wish them to be communicated that way.

I realize that there is ongoing discussion about this work, which I will link to here. I am still struck by Leavitt’s statement, which I tweeted here, which to me signaled the intent to overall to provide an environment where privacy is respected and patients have access to information that helps them be healthy.

So here goes.

1. The Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information

The goal of this effort is to establish a policy framework for electronic health information exchange that can help guide the Nation’s adoption of health information technologies and help improve the availability of health information and health care quality.

(again, thinking about Leavitt’s statement above)

INDIVIDUAL ACCESS – Individuals should be provided with a simple and timely means to access and obtain their individually identifiable health information in a readable form and format.

(more on this in another document)

2. Privacy and Security Framework: Introduction

This guidance is limited to addressing common questions relating to electronic health information exchange in a networked environment, and, thus, is not intended to address electronic exchanges of health information occurring within an organization.

(some patients get care from federated medical groups as part of integrated care systems that securely share information between providers when there is a need to provide care)

3. Safeguards Principle and FAQs

Does the HIPAA Privacy Rule permit health care providers to use e-mail to discuss health issues and treatment with their patients?

(this whole section is interesting, but just clipping the following part)

Patients may initiate communications with a provider using e-mail. If this situation occurs, the health care provider can assume (unless the patient has explicitly stated otherwise) that e-mail communications are acceptable to the individual. If the provider feels the patient may not be aware of the possible risks of using unencrypted e-mail, or has concerns about potential liability, the provider can alert the patient of those risks, and let the patient decide whether to continue e-mail communications.

4. The HIPAA Privacy Rule’s Right of Access and Health Information Technology

IMPLEMENTATION OF DENIAL The Privacy Rule further requires that denials of access be timely, written, provided to individuals in plain language, with a description of the basis for denial, and if applicable, contain statements of the individual’s rights to have the decision reviewed and how to request such a review. In addition, the notice of denial must inform the individual of how complaints may be filed with the covered entity or the Secretary of HHS. If access to some of the PHI is denied, the covered entity must, to the extent possible, give the individual access to any other PHI requested, after excluding the PHI to which the covered entity has a ground to deny access. See 45 C.F.R. § 164.524(d)(1).

However, where the covered entity provides individuals with electronic access to some or all of their health information, through a PHR or similar means, and the access is available to the individual at any time and without a request, it becomes more difficult to determine whether a denial of access has occurred and when notice to the individual is required. For example, the requirements in the Privacy Rule are flexible enough to permit a covered entity to notify the individual in advance of the types of PHI to which it intends to deny access and for which the Privacy Rule does not provide a right of review. See 45 C.F.R. § 164.524(a)(2).

(These appear to me to frame personal health records which show parts of a person’s medical record as implementing a form of denial of access which an organization should explain proactively, as opposed to “provision of limited access” which I think is what many organizations do today, without proactive explanation why some things are shown and some not)

There is a lot more in the documents that are relevant to someone like me and many people reading this post. I just wanted to highlight the ones that I noticed, again, with the intent I felt I heard in that conference room in Washington, DC. See what you think.

The parenthesis in the title are mine:

Before lawmakers act, they need to think: If stimulus money supports a proliferation of systems that can’t exchange information, we will only be replacing paper-based silos of medical information with more expensive, computer-based silos that are barely more useful. Critical information will remain trapped in proprietary systems, unable to get to where it’s needed.

I would suggest that we be concerned also about the proliferation of systems that keep patients’ health information opaque to patients themselves. The new HHS Privacy Framework, in my opinion, seems to open the door to this possibility (I will quote on it in a post tomorrow) – if a stimulus money is given to a system, should the system also be interoperable with patients and their families by giving them access to it?

Most participants agreed that access to the EHR is a fundamental patient right and that the implementation of PAEHRs should not be delayed.

There was also an important discussion and debate about when results should be provided—in real-time, after physician approval, or after a specified time delay. A balance must be struck between making the information available to patients in a timely fashion that supports self-managed care and patient safety so that patients are not unduly stressed by complex and ambiguous information. However, it is evident that the health care community is currently divided on this issue.

Hey, I am starting to toy with the idea of E Visits, and getting paid for them. I have heard of few other groups that are making these fly. From your travels, have you come across any fee for service group that is making these work. It appears some third party payors are paying for them – up to $35 per visit. Hope all is well, Matt

I had some ideas of people who I could refer this question to, but wanted to refer it to the readers here, for their ideas. Matt said OK to post here with his name and organizational affiliation. Do you know of groups who are providing reimbursed e-visits and how is it going? Patient, staff, doctor perspectives are welcome…

Let’s help Matt support a patient-centered, results-only patient experience. Please post your ideas in the comments.

Congratulations to the patients and staff at The Everett Clinic on completing their EHR implementation – I see that they now have a link to “My Medical Record” at The Everett Clinic. Great job! Let’s see if Matt can also tell us how that part of things is going…

Glenlake Medical Office, Kaiser Permanente Georgia Region

Crescent Medical Office, Kaiser Permanente Georgia Region

Yesterday was day 2 of 2 of my Gemba walk at Kaiser Permanente, Georgia Region.

The quote in the title of the post came from Pearl Spencer, RN, when I asked her what the impact was of real-time delivery of most test results to patients via their personal health record (My Health Manager, on kp.org) which is the case within this health system.

Prior to the advent of the personal health record, when a patient was being seen in the medical office and needed a lab test, the test would be ordered, they would go to the lab, and then they would come back to the waiting room, to be called back in when the test was completed and the physician was ready to see them.

Now, because tests are shared with patients on kp.org in real-time, some are finding out that results are ready via “tickler” e-mails being sent to their smartphones while they are waiting, even before the physician has seen the result, because they are with another patient.

This has resulted in a change in workflow – they now advise patients up front how their health care team will respond to the questions about their test results and are prepared for a quicker turnaround, to respect the patient’s time. As Pearl said to me, in any other doctor’s office (without a personal health record), teams typically prepare for results to be delivered to patients in 3 days to several weeks. In her team, they prepare for delivery in hours, or even less.

So it’s happening – the personal health record is changing patient expectations, and health care teams are innovating in response. This finding excited me so much I tweeted it right away…. And, I got this Tweet back, from Jason Bahn, MD. I happen to love that the real life experience of a nurse serving patients using next generation tools can have such an impact.

Is there any reason that any patients in any care system shouldn’t experience this awareness of their time on the part of their care teams?

Overall, I learned a ton, and this is going to be (a) a great start to learning more and (b) great foundation for the work I will do, when I can always think about what weighs on people’s minds as I support them.

With gratitude to the members and health care teams at Southwood, Glenlake, and Crescent Medical Offices at Kaiser Permanente Georgia for the great teaching, and their medical and nursing leadership for creating the learning environment for all involved.

Note the discussion among the public, comparing the responses from people who have experienced the access:

“Sunnybrook Hospital has provided this service for approximately 6 months. Keep the access coming.”

And those who haven’t (yet). It says that Alberta will show the entire medical record to patients. Congratulations!