Tag Archives: health information exchange

Oregon Welcomes Regina Holliday to AIM Oregon HIE Conference, Part I

Today was a really great day. This morning I finished a draft of a whitepaper for the VA, about patient-facing health IT. Then I sped to the Oregon Convention Center, for Oregon’s 1st annual Health Information Exchange stakeholder conference.

AIM 2011 – Accelerate, Innovate, Motivate – was wonderfully attended, well organized and packed with great speakers from Maine, Vermont, Colorado, Tennessee and of course our own backyard. I was late so didn’t hear all that ONC Coordiantor Farzad Mostashari had to say (good they taped it). But the coolest thing was to see Regina Holliday, set up with easel and canvas, standing up front on a podium, to the right of Dr. Mostashari.

Regina is a force, a transformation, a sunburst embodied in a single body. Her important message has taken root. Just look at all the speaking engagements on her website, past and present. That message salience and poignance keeps growing – as health IT and information exchange and shared health data activities swirl and grow. Patient advocacy and participatory medicine are in the ring, and even though their volume could be turned up (way up), these things have a way of gaining traction.

Especially with stories and poems and paintings from @ReginaHolliday. She did 4 (four!) before the mid-afternoon speakers came on.

The first painting shows a large pink heart, and a woman’s face looking at the ONC Coordinator. Regina says its opening access to the personal information and it’s love, people getting information they want and need, to help lives. Nearby, a wireless tower offers the channel to make it happen.

At the conference, Carol Robinson, Director of the Health Information Technology Oversight Council, announced the Oregon e-Health Consumer Pledge and those who agreed to it. Regina painted Carol peering up at the dawn of the HIT revolution. Her outstreched hand has a caduceus medical symbol, with the bottom tip poked through her hand. The change will be glorious, Regina says, “but it will cause some pain.” The caduceus’ rod is the “i” in HIT, representing ‘Put the I in HIT’ campaign of the ONC.

Two more paintings followed. I can’t do their explanations justice, and will wait for Regina to talk about them on her blog.

All I can say is, thanks, Oregon HITOC, for bringing her stories and her art to the conference. Thanks, artiste Holliday, for your time and your heart(s) and your wisdom and grace.

Listen up, Health Information Exchanges: Let Patients Help!

Oregon HIE Imperative: Garner Trust of Consumers

When all the technical, standards, data, privacy and security issues related to statewide Health Information Exchange (HIE) are tackled – as they must be – I believe that the ability to garner trust will predict success.

How can HIEs engage consumers and clinicians create trust? I don’t have great or perfect answers, but setting a high bar for transparency and making it personal might be reasonable guesses.

I recently attended an Oregon HIE stakeholder meeting. Over 150 (mostly professionals) listened to strategic and roll-out plans for the state. I haven’t attended these because they happen during clinic time, but I’m encouraged by what I see – on paper anyway. It’s refreshing that all meeting summaries and presentations are on Oregon.gov (I just love the open government spirit, like Health & Human Services recent sharing of public health data).

Oregon’s framework is a great one: the Institute of Healthcare Improvement’s “triple aim” to improve patient experience, improve population health, and lower per capita costs. We are increasingly finding that shared records can achieve all three aims. Although the research is still limited, it consistently finds that patient access to their information leads to more informed and engaged people. Adding expert feedback to the mix improves health outcomes. So, an HIE that provides access to consumers as well as clinicians is more likely to achieve the “triple aim”. As for cost savings – we need to see patients/consumers as a source of data validation. That’s where transparency comes in.

As for trust, it looks like Oregon is setting itself up to get there. The June 1st draft of the Oregon HIE Strategic and Operational Plan states,

An overarching imperative…[is to]..establish a governance structure that achieves broad-based stakeholder collaboration with transparency, buy-in and trust. –Oregon HIE

Oddly, I keep wondering whose trust must we garner? In HIE conversations the “trust” default is about gaining clinician trust. After all, they must release the data, or there will be no HIE, right? Yet I believe consumers are the underutilized stakeholder. Grieg Anderson, an American Diabetes Association volunteer, spoke eloquently and answered my question. He confided he has diabetes, and yes, he’s concerned about privacy. But, he said, this was a secondary issue. He wants his health information to be accurate and complete. He continued,

Providers don’t know when the information is not complete [or accurate]. If we’re designing a system with less complete information, we’re asking for higher costs. –Grieg Anderson, Volunteer, American Diabetes Association

His words are spot on. And personal. We must garner trust in the people involved in creating those records – the patient and the clinician. We have a lot of work to make this happen. It has to be early on, well thought-out and implemented. In gaining consumer trust, we will have to use personal stories, like Grieg’s.