Thanksgiving 2011: Occupy The Dinner Table and Engage With Grace

The Engage with Grace Project is an effort to raise awareness of the importance of end of life care planning and discussing your wishes with your family and friends.

Dr. Bryan Vartabedian captures the simplicity of the project in his post, "It began with a simple idea: Create a tool to get people talking. Their tool is a slide with five questions designed to initiate dialog about our end-of-life preferences."  Take time during the Thanksgiving weekend to "occupy the dinner table" with your family and friends. Discuss the 5 questions below and share your thoughts and feelings.
 
This is my 4th year participating in the Engage With Grace Project. What prompted me to start participating? It was having the opportunity to watch Alexander Drane tell Za's story at the 2008 Health 2.0 Conference. Her story personally connected as I shared in my 2008 blog post.

West Virginia is often negatively portrayed nationally at the bottom or top in national health rankings. However, it is great to see West Virginia leading the way on end of life care planning. 49% of West Virginians have filled out at least one advance directive -- the highest among all states reporting these statistics. However, this statistic shows how few of us actually take the time and effort to document our wishes. More than 1/2 of the population have left these difficult decisions to be made by their family and health care providers. This statistic shows the importance of the Engage With Grace message.

For West Virginia readers who want to learn more about end of life care check out the resources provided by the West Virginia Center for End of Life Care. There is valuable information for health care professionals to "Why and how to have end-of-life discussions with your patients", "Accessing Decision Making Capacity", and POST (Physicians Order for Scope of Treatment) Forms.  The website also provides FAQs, educational videos, and forms, including the standard West Virginia Advanced Directive Forms.

West Virginia is also creating the e-Directive Registry in conjunction with the West Virginia Health Information Network (WVHIN), West Virginia's health information exchange (HIE). The e-registry will store advance directive forms, Physicians Orders for Scope of Treatment forms, and do not resuscitate cards. The registry will allow treating health care providers to access the stored information 24/7 from around the state through the WVHIN. Most importantly, the registry will be accessible by you and I as health care consumers to verify the accuracy of our wishes. 

Following is the 2011 blog post by the Engage With Grace Team -- Occupy With Grace. Help spread the word this Thanksgiving weekend by telling your end of life care story and posting the message below. You can get the HTML to post here.
 
Occupy With Grace
 
Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.
Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it - it's the Occupy Wall Street movement that's got people talking.
Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn't an issue we need to raise our fists about - it's an issue we have the luxury of being able to hold hands about.

It's a mission that's driven by all the personal stories we've heard of people who've seen their loved ones suffer unnecessarily at the end of their lives.

It's driven by that ripping-off-the-band-aid feeling of relief you get when you've finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they'd want for themselves, and knowing you could advocate for these wishes if your loved one weren't able to speak up for themselves.

And it's driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you're all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!

Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn't matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.



We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country's sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:

For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they're in a crisis, which isn't the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor's office.

It's a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.
This is a time to be inspired, informed - to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season. Let's Engage with Grace together.

To learn more please go to www.engagewithgrace.org.This post was developed by Alexandra Drane and the Engage With Grace team.

WVHIN: Public Comment Period on Proposed Privacy and Security Policies

The West Virginia Health Information Network (WVHIN), West Virginia's health information exchange, has issued proposed privacy and security policies and is seeking public comments on the proposed policies from December 3, 2010 through January 3, 2011. The WVHIN is a public/private partnership created in 2006 under W.Va. Code 16-29G-1 et seq. and is charged with building a secure electronic health information system for the exchange of patient data among physicians, hospitals, diagnostic laboratories, other care providers, and other stakeholders.

The proposed privacy and security policies that are available for review and comment are as follows:

• Patient Consent - General
• Patient Consent - Permissible Purpose
• Patient Consent - Sensitive Health Information
• User Authorization
• User Authentication
• Patient Amendment of Protected Health Information
• Patient Access to Protected Health Information
• Minimum Necessary
• Breach Notification

Pursuant to a press release from the WVHIN on the proposed privacy and security policies:

“WVHIN has been developing our core privacy and security policies that will guide us in our initial health information exchange implementation and pilot for 2011. We expect to have changes to the policies as a result of learning how to improve our operations through testing in the pilot period.“

“The policies have been developed over the past few months by the WVHIN Privacy and Security Committee and legal counsel, and are based upon an established WVHIN Privacy Framework and national best practices recommendations in Health Information Exchange (HIE). The committee is made up of stakeholder organizations including provider groups, state government, and consumer groups. The committee followed a cycle of reviewing and vetting the policies that have resulted in our drafts.”

“We have established a public comment period for the draft policies and would like to invite any member of the public to comments on these policies. Thus, we would like to request your assistance in forwarding this e-mail to any parties you may feel would like to comment on the policies. We welcome all feedback”, according to Business Development Manager Samantha Stamper.

Written comments on the proposed privacy and security policies may be submitted to Samantha Stamper, Business Development Manager by January 3, 2011 at sstamper@wvhin.org.

WV HIT Funding Under HITECH: WVHIN Gets $7.8M and WV REC gets $6M

Health and Human Services Secretary Sebelius and the National Coordinator for Health Information Technology, David Blumenthal, announced the HITECH funding under the ARRA for State Health Information Exchanges (HIEs) and Regional Extension Center (RECs) across the country.

The White House Press Release provides a detailed list of HIEs and RECs receiving grants. Inormation is also available via the HHS News Release, Sebelius, Solis Announce Nearly $1 Billion Recovery Act Investments in Advancing Use of Health IT, Training Works for Health Jobs of the Future.

West Virginia will receive the following funding:

• West Virginia Department of Health and Human Resources in conjunction with the West Virginia Health Information Network HIE Award: $7,819,000

• West Virginia Health Improvement Institute, Inc. REC ward:$6,000,000

More information about the health information technology programs and awards can be found on the Office of National Coordinator HIT Website.

• State Health Information Exchange Cooperative Agreement Program

• Health Information Technology Extension Program

WVHIN Releases RFP for West Virginia Health Information Exchange

Today the West Virginia Health Information Network released a Request for Proposal (RFP) for a statewide Health Information Exchange. More information, including the deadlines, bidder worksheets and a full copy of the RFP are available on the WVHIN website.

Following are sections from the RFP that provide a general overview of the proposed West Virginia Health Information Exchange and a general scope of the RFP:

The West Virginia Health Information Network (WVHIN) is soliciting proposals to provide a statewide Health Information Exchange (HIE) infrastructure platform for physicians, hospitals, other health care organizations, and consumers. The purpose of this Request for Proposal (RFP) is to obtain vendor services and expertise in support of the WVHIN. Details on the scope of work, requirements and deliverables are contained in this RFP. WVHIN reserves the right to use the results of this RFP to obtain services for additional and related work should the need arise throughout the course of this project . . .

. . . According to the eHealth Initiative’s Sixth Annual Survey of Health Information Exchange 2009, there are almost 200 self‐reported HIE initiatives across the country with a substantially increased number of organizations that reported being operational. The impetus for HIEs has increased as a result of the passage of the American Recovery and Reinvestment Act (ARRA) of 2009 and specifically key provisions from the Health Information Technology for Economic and Clinical Health (HITECH) Act. These provisions called for the Office of the National Coordinator (ONC) to create a program to engage in collaborative agreements with states or “qualified” state‐designated non‐profit, multistakeholder partnerships to “conduct activities to facilitate and expand the electronic movement and use of health information among organizations according to nationally recognized standards.” . . .

. . . There are 1.8 million people in the very rural state of West Virginia with a high level of elderly and low‐income people in many of the rural areas. With a geographically dispersed population, access to and coordination of care is a critical issue. To serve this rural population, there is a relatively high number of hospitals with less than 100 beds and a high level of clinics serving the underserved making access and care coordination both difficult and essential. Based on the population profile and the number of small providers, a strong case was made for the need for a statewide HIE, which will help providers overcome communication and geographic barriers to access and coordination of care.

The WVHIN was established in July 2006 by the West Virginia Legislature at the request of the Governor. The WVHIN is a sub‐agency under the West Virginia Health Care Authority. The intent of the legislation was for the WVHIN “to promote the design, implementation, operation and maintenance of a fully interoperable statewide network to facilitate public and private use of health care information in the state”. With this authority, the WVHIN established a multi‐stakeholder board and has been working with stakeholders to develop and implement a state‐level HIE. . .

. . . With this mandate, the WVHIN established a vision to enable “high quality, patient centered care facilitated by health information technology”. The WVHIN mission is as follows: “The West Virginia Health Information Network provides the health care community a trusted, integrated and seamless electronic structure enabling medical data exchange necessary for high quality, patient‐centered care.” Guiding principles have been established around collaboration, facilitation of patient‐centric care, enabled participation by all providers, quality improvement, patient participation, privacy and security, and sustainability.

The WVHIN, along with health systems, physicians, other providers, payers, and consumers, has a unique opportunity to establish a state‐level HIE infrastructure that helps communities and regions share data across organizations. The WVHIN is well positioned to provide a cost‐effective HIE infrastructure that benefits from economies of scale while enabling communities to develop their own unique solutions. As a convener and collaborator, the WVHIN will build bridges between health care stakeholders to launch and fund HIEs. It will help communities address complex issues such as setting standards for interoperable data exchange, addressing liability, setting policies for privacy and security, and exchanging data across state lines. It will collaborate with other health information technology (HIT) and HIE initiatives such as the Regional Extension Center (REC) to be initiated, public health, Medicaid, and others, to leverage collective resources. WVHIN activities are being pursued within the parameters of the West Virginia Statewide Health Information Technology Strategic Plan. WVHIN is one of several participating entities that jointly developed the strategic plan.

West Virginia's Statewide Health Information Technology Strategic Plan

Over the past several months I have been involved with a group in developing West Virginia's statewide strategic plan for health information technology.

The final draft of the West Virginia Health Information Technology Statewide Strategic Plan, September 2009 is now available for review and comment. Additional comments and feedback on the strategic plan are welcome.

The strategic plan is a part of West Virginia's efforts to position itself as a national leader in implementing and adopting health information technology to improve our health care system. The strategic plan will be a part of the the state's efforts to submit applications to the Office of the National Coordinator for Health Information Technology (ONC) for funding under the State Health Information Exchange Cooperative Agreement Program and the Health Information Technology Extension Program: Regional Centers Cooperative Agreement Program, both programs developed under the American Recovery and Reinvestment Act of 2009, Title XIII - Health Information Technology, Subtitle B.

The project has been lead by the Adoption of Health Information Technology Workgroup under the West Virginia Health Improvement Institute. Both private and public stakeholders from across West Virginia have collaborated and provided input into the development of the strategic plan.

Health 2.0: Stay Focused on the Goals

Ben Heywood, co-founder of PatientsLikeMe, outlines simple (but difficult) goals that those in the health 2.0 space must accomplish. Based on his post I take it that he highlighted these during his keynote address at the second Health 2.0 Northeast conference.

His simple but eloquent message to the health 2.0 community:

I believe we, as the eHealth community, need to focus on two major goals: 1) solve patients’ problems, and 2) create business models that allow us to do #1.

Successful companies must show real and tangible benefits directly to the patient consumer. As one who regularly participates in the health information discussion and debate as West Virginia moves forward with its health information network infrastructure -- I often try to step back and ask, like Mr. Heywood, the simple question, "does this help the patient -- why and how?"

To be disruptive and successful the current crop of creative companies have to show a direct and immediate impact on improving care and quality linked to a reduction in cost or a value proposition that the increase in cost is worth such expenditure.

Does Your Doctor Use An EHR?

The latest statistics are out regarding the adoption and use of electronic health records (EHRs). The New England Journal of Medicine published the government sponsored survey report. Check out the article in the NY Times, "Most Doctors Aren't Using Electronic Health Records." (full report - Electronic Health Records in Ambulatory Care -- A National Survey of Physicians).

The article indicates that only 9% of medical practices with less than 3 physicians have adopted an EHR -- while the percentage increases to 50% for those practices with 50 or more physicians. The comments in the article by one physician seem to confirm a recent conversation with Jack Shaffer, health IT specialist, that EHRs don't necessarily improve physician efficiency.

West Virginia native, Dr. Brailer, is quoted in the article:

But the new study is based on a large sampling — more than 2,600 doctors across the country — and a detailed survey, making it more definitive than past research, experts say. The results, they say, also show a strong endorsement of electronic health records by doctors who have them, especially for what the report termed “fully functional” records, which include reminders of care guidelines, based on a patient’s age, gender or medical history.

For example, 82 percent of those using such electronic records said they improved the quality of clinical decisions, 86 percent said they helped in avoiding medication errors and 85 percent said they improved the delivery of preventative care.

“Those numbers are huge and very encouraging,” said Dr. David J. Brailer, the former health information technology coordinator in the Bush administration.

Dr. Brailer also pointed to the 54 percent of doctors without electronic health records who said that not finding an electronic health record that met their needs was a “major barrier” to adoption. In short, they are not satisfied with the existing products, which tend to be designed for hospitals — big customers — instead of small practices.

“What we see is a deficit in innovation, and that is something innovators and the capital markets can address,” said Dr. Brailer, who leads a firm that invests in medical ventures, Health Evolution Partners.

AthenaHealth is also mentioned in the article. Over the last several months I have been thinking about whether a web based service as software approach, like AthenaHealth, might be an method to grow the adoption of EHR usage in West Virginia as a part of the West Virginia Health Information Network.

The report finding that that most doctors are not satisfied with existing technology should give Dr. Parkinson via Hello Health and other health 2.0 innovators a positive sense of opportunity.

WVHIN Board Meeting (January 2007)

On Friday the board of the West Virginia Health Information Network (WVHIN) met and covered a variety of topics and continued its efforts to coordinate the creation of a successfully integrated health information system. (Note: The WVHIN board is still in the search phase for an Executive Director).

Topics of the board included the following:

1. A status report on the submission of Interim Report of the West Virginia Solutions Group under Health Information and Security and Privacy Collaborative (HISPC). A motion was made and passed to integrate and continue to carry on the HISPC project work under the auspices of the WVHIN after the project grant is completed in 2007.

2. Update and approval of the WVHIN Bylaws, including a letter from the State Ethics Commission approving the form and substance of the Bylaws and indicating that the Bylaws meet the open meeting law requirements in West Virginia.

3. An update on the pending e-prescribing legislation (Senate Bill 69) introduced by Governor Manchin to address the current restrictions on allowing e-prescribing by physician and pharmacists in West Virginia. There were also a number of e-prescribing presentations providing the details of how such systems will work and current statistics on e-prescribing in West Virginia and nationally.

4. An update on the FCC Broadband Grant application process.

Included in the handout materials for the board meeting was a copy of a recent article appearing in Health Care's Most Wired Magazine by my fellow board member, Sarah Chouinard, M.D. Interesting article (see next post).

Tags: WV, West Virginia, health care, WVHIN

WVHIN Executive Director Wanted

In 2006 I was appointed to serve a four year term as a Board Member of the new West Virginia Health Information Network (WVHIN). The WVHIN was created in 2006 to help guide the state's efforts and oversee the implementation of a private/public interoperable health information system for West Virginia.

Last week I was speaking with Sallie Hunt, Chief Privacy Officer for the State of West Virginia, who has been instrumental in overseeing the initial activities and assisting with the startup of the WVHIN. She advised that they are now in the process of searching for a full time Executive Director. If you are interested in applying for the position or know of someone who might be interested, please contact Sallie Hunt at (304) 558-7000 Ext. 252.

Sallie provided me with the following summary of the Executive Director job description being used by the search committee.

The Executive Director (ED) is the primary executive officer of the WVHIN, reporting to the WVHIN Board of Directors. As such, the incumbent is responsible for assisting the Board to develop the policies and procedures of the Health Information Network (the WVHIN), for implementing these policies and procedures, and for initiating a periodic review of these policies and procedures.

The ED is responsible for the overall administration and management of the WVHIN. This responsibility includes planning and evaluation, policy development and administration, personnel and fiscal management, public education, provider recruitment, business model development, and media and public relations. The successful candidate will have excellent problem-solving skills, be a self-starter, have an entrepreneurial spirit, and be able to function with minimal supervision.

This position will be the "public face" of the WVHIN and, as such, the incumbent will have to have strong speaking, presentation development and writing skills, with the ability to convey highly technical issues in a clear and compelling manner. The incumbent will have to interact regularly with a wide variety of audiences—healthcare providers, potential and existing funders, policy-makers and executive leaders, consumers, and vendors—and will need the skill to drive and balance a multi-stakeholder constituency group.

The ED will be responsible for developing, maintaining, and engaging in a relationship with the vendor directly providing the technology services of the WVHIN. Thus, the incumbent should have contract management skills and preferably the ability to manage a highly technology-dependent project.

Finally, the ED will have the personal qualities that enable him/her to work comfortably in an environment characterized by significant uncertainty. With the possibility of the governance structure changing and ongoing fund development needs, the ED will spend significant time and energy assisting the Board of Directors and other state stakeholders to arrive at decisions that assure the WVHIN a clear strategic direction and long-term viability. The incumbent must be comfortable working with diverse organizations and in maintaining a balance among competing interests. This balance sometimes requires making difficult decisions to keep the project on track.

Tags: WVHIN, WV, Charleston, health care, technology