Shared Health Data http://www.sharedhealthdata.com design. deliver. better health with your own information. Tue, 31 Jan 2017 13:33:22 +0000 en-US hourly 1 https://wordpress.org/?v=4.7.5 13206698 Open Notes Interview on Health Literacy Out Loud http://www.sharedhealthdata.com/2017/01/31/open-notes-interview-on-health-literacy-out-loud/ Tue, 31 Jan 2017 13:33:22 +0000 http://www.sharedhealthdata.com/?p=2180 I had the pleasure to do a podcast with Helen Osborne on OpenNotes, the online sharing of clinical notes with patients, and its relevancy to health literacy. Helen is well known in the world of health literacy, as a consultant, educator, and speaker. She is also an author, including the award winning Health Literacy from A-Z.

Open Notes: Building Transparency, Trust, and Better Health Outcomes (HLOL #154)

When Helen and I first talked, she had some questions on whether or not Open Notes was a good topic for her podcast. We talked about research showing that people who read their doctor’s note feel empowered and more control of their health, and better prepared for their medical appointments. I shared findings from our VA study, about how people think access to notes is a communication tool, and instances where patients improved the quality of their care by reading their notes.

Transparency leads to trust, and trust leads to better communication and better outcome, so it really behooves us all to be advocates.

Improving health literacy is more important than ever. Now that digital access and use of technology is essential, the worlds of literacy – from all angles and including technology – must come together. Broadband and technology proponents use the term “digital inclusion”, and literacy is but one component of that. Having unified language within the literacy and inclusion arenas would be highly valuable.

Thank you, Helen, for the opportunity to bring Open Notes to Health Literacy Out Loud.

Transcript of the Podcast

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HIPAA is 20 – 10 million can get doctor’s notes online http://www.sharedhealthdata.com/2016/09/01/hipaa-is-20-10-million-can-get-doctors-notes-online/ Thu, 01 Sep 2016 20:27:41 +0000 http://www.sharedhealthdata.com/?p=2144 Happy 20th Birthday, HIPAA. You are still misunderstood…

Do you know what HIPAA stands for? It’s the Health Insurance Portability and Accountability Act. Go to a doctor’s office, and it may cited as a wall keeping you from your record. Yet that’s not correct, and HIPAA just doesn’t get any respect.
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The P means Portability. Meaning, being able to port or connect or carry health information from one place to another. That one place so important to people is THEM. Getting access to THEIR notes – including clinic and hospital notes written by doctors and nurses.

It’s great to see that through the OpenNotes project, 10 million can access to their clinical notes online. That would be through secure patient portals. It’s mostly larger systems, like the VA and Mayo and Beth Israel Deaconess. There’s a lot of room to move, though, since people largely go to smaller places or go to multiple places to get their care. So there’s a lot to do. If we look at the map of where we are today, there’s lots of pockets lacking note sharing. Sadly to say, Maine, my own state is one of them.

I’m having formal and informal discussions, and really have just started the conversations. As more evidence is coming in, people will take more notice of it. And since Maine is a great place to collaborate on quality (Quality Counts) and consumer engagement (GetBetterMaine) and electronic information sharing (HealthInfonet), I couldn’t be more pumped to get this party started!

The mission is simple: add notes to patient portals, no cost for sharing, have people read them, partner with clinicians!

I’ll be sharing evidence on experience and impact of sharing notes. There’s been recent papers on the effect of notification to go look at notes, recall to refill medications, and some fascinating work coming out of Portland, Oregon, on the impact in mental health – from patients and clinical team members. Stay tuned!

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Improving Maine’s health, MaineHealth stays focused on data http://www.sharedhealthdata.com/2016/01/18/improving-maines-health-mainehealth-stays-focused-on-data/ Mon, 18 Jan 2016 18:14:46 +0000 http://www.sharedhealthdata.com/?p=2114 This is a Guest Post by Tim Cowan, Director of the MaineHealth Index, an initiative of MaineHealth that monitoring Maine’s most pressing health priorities. Launched in 2008, Health Index uses data to inform the needs and opportunities for improving health across the state.
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Sit down at the counter in one of Maine’s smoke-free diners and talk to the typical Mainer next to you about healthier living, and more specifically smoking.

Odds are you’ll be talking to someone around 44 years old. Compared to his fellow Americans, he will be more likely to die from smoking, including cancer related to tobacco use, especially lung cancer. There’s just under a two-in-three chance he’ll have a weight issue, including a 29 percent chance he’ll be obese. He’ll be more likely to binge drink and, sadly, more likely to commit suicide.

Do you think smoking remains a big problem here?

In between big bites of bacon and eggs, with a side of pancakes no doubt, you might get a response that goes something like this: “It’s not nearly as bad as it used to be. I mean, I quit two years ago. Well, for a while, anyway. So, nah, not so big a problem anymore.”

And that typical Mainer would be half right. We have made progress on reducing tobacco use in Maine over the past decade and a half. The best known of Maine’s public health initiatives brought higher tobacco taxes, smoking bans in most workplaces and later such bans in all public settings. It also brought some very effective tobacco cessation efforts funded with money from a state settlement with the Big Tobacco companies. As a result, smoking rates in Maine have declined from about 25 percent of adults and 38 percent of youths in 1995 to about 19 percent of adults in 2014 and 10 percent of youths in 2015 (use of any tobacco products among youths was 16 percent). Over the past three years, about six in 10 adult Maine smokers quit for at least one day. That’s progress, but a close look at that typical Mainer tells us it’s not nearly good enough.

When we look at the investments we’ve made in recent years to prevent youth from using tobacco products and to help tobacco users become free of their dependence on nicotine, and then we compare those to the costs tobacco use still imposes in Maine’s communities, we get a picture of a modest investment yielding modest results. Unfortunately, this holds true for many of our efforts at improving public health. Yes, many good, smart and dedicated people are working very hard through innovative and effective programs to help us change our habits to be healthier, but those hard-won successes often represent humble progress against daunting challenges. We can and should do more.

I’m proud to be part of an organization that has as its vision, “Working together so our communities are the healthiest in America.” As part of that, MaineHealth provides the very best care it can as close to home as possible through our member hospitals, physician practices and outpatient facilities. However, we also help fund and manage programs and partner with others in efforts aimed at improving public health. For instance, the MaineHealth Center for Tobacco Independence runs the statewide tobacco treatment programing on behalf of the Partnership For a Tobacco-Free Maine – including providing free assistance with quitting through the Maine Tobacco Helpline. MaineHealth’s member organizations have helped lead the successful implementation and expansion of Let’s Go 5-2-1-0, which aims to increase physical activity and reduce obesity among youth in many of Maine’s communities. Our member hospitals are also doing a variety of outreach and programming aimed at making healthier communities.

But a healthier Maine cannot be achieved by our organization, or any organization, working alone. This takes real collaboration. All levels of government need to contribute with both funding and policies proven effective through scientific studies. Businesses, large and small, need to understand that investing in the health of their employees helps the bottom line. And schools, nonprofits, philanthropists, foundations and families and individuals all have a role. By working together and enhancing each other’s capacity, we will have the greatest impact.

This is a good time to be discussing the health of the people who live here. A unique statewide collaboration among Maine’s larger healthcare organizations and the state Center for Disease Control and Prevention has recently completed a report called the Community Health Needs Assessment. This document is a report card that grades our public health results in Maine.

The report provides data by county and for the state as a whole and can be viewed at www.mechna.com.

It paints that picture of the typical Mainer outlined above and also identifies challenges such as poverty, mental illness, substance abuse and addiction and access to healthcare coverage. These factors contribute to higher healthcare costs. They also make our lives shorter, less healthy and less happy. The data show, among other things, that smoking remains a big problem here. Lung cancer alone claims around 50 lives per 100,000 each year, and smoking-related deaths from all causes add up to about 100 out of every 100,000 people each year.

This doesn’t mean we shouldn’t be alarmed about obesity, mental health, drug and alcohol abuse and other factors that can erode our quality of life and contribute to premature death. We should be. But we should still be alarmed that tobacco use continues to kill so many, and we shouldn’t be satisfied with the progress we’ve made thus far.

The financial return on better health for Mainers is huge, but other than efforts targeted at specific employee groups, those returns tend to be diffuse and don’t collect as a single revenue stream. This makes funding health improvement tricky. Yet, higher worker productivity, lower utilization of expensive medical care and better quality of life have real value, making health improvement a smart financial investment.

Health improvement requires the attention of many stakeholders. It has been easy historically for any one of them to step back on the hope that others will pick up the slack. We’ve seen this in recent years as the Fund for a Healthy Maine, which was created by the state to fund health improvement activities with tobacco settlement monies, has been eroded to help balance the state budget.

Many large businesses, meanwhile, have stepped up with innovative and substantial employee wellness initiatives and have achieved impressive results, but many others have lagged. Meanwhile, small business owners – stretched for time and resources – struggle with strategies to motivate employees to pursue healthier habits.

And by no means have we in health care done all that we could or should, but we are focused on getting better. To that end, the consortium that undertook the health needs assessment – which calls itself the Shared Health Needs Assessment Planning Process – is coordinating with hospitals and other stakeholders to gather public input on our health status and the problems that need to be addressed.

In coming months there will be forums in every Maine county to get feedback that will be used by local hospitals to develop community health programing. For more information, contact your local hospital or go to www.meshnapp.com.

I look forward to someday stepping into that diner and sitting down next to a fit fellow enjoying some nonfat yogurt and fruit or maybe some oatmeal. He’ll have just come from a long walk along a new path built with the help of his local town and committed community volunteers. He will be proudly smoke free, a moderate drinker and happy to be living in such a beautiful place. When I ask him if tobacco use remains a concern, he won’t hesitate.

“We’ve got to keep at it,” he will say. “There are too many lives at stake.”

Original article published in the Portland Press Herald, December 27, 2015.

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Imagine there’s no countries…it isn’t hard to do http://www.sharedhealthdata.com/2015/11/14/imagine-theres-no-countries-it-isnt-hard-to-do/ Sat, 14 Nov 2015 12:26:57 +0000 http://www.sharedhealthdata.com/?p=2103 lennon

Imagine all the people living life in peace. You may say I’m a dreamer, but I’m not the only one. I hope someday you’ll join us, and the world will be as one.

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Going Mainstream: Online Sharing of Test Results With Patients http://www.sharedhealthdata.com/2015/07/15/going-mainstream-online-sharing-of-test-results-with-patients/ http://www.sharedhealthdata.com/2015/07/15/going-mainstream-online-sharing-of-test-results-with-patients/#comments Wed, 15 Jul 2015 16:47:54 +0000 http://www.sharedhealthdata.com/?p=2073 This post is the full essay published in the journal Cancer Cytopathology. The journal editor invited me to submit a piece for their “Clinician’s Corner” section, focused on patient online access to their rest results. Who could refuse?! Thanks to @CancerCytopath for making this open access & available to the public. The paper and journal can be accessed here and here.

Outside the walls of medicine, seismic shifts are affecting how health professionals do their jobs and how the public experiences care. People are harnessing information previously outside their reach and are connecting with one another online in ways not imagined a few years ago. With ready access to the Internet and the use of always-on devices, expectations have never been higher for the availability of health-related information and online services.

Inside health care, events are converging to make personal health data more transparent and accessible to patients. The Health Insurance Portability and Accountability Act secures the right for consumers to access their health data despite many who remain unfamiliar with the law and the cumbersome—and potentially costly—process for patients to obtain records. Meaningful-use incentives promote electronic health record (EHR) investment, which creates building blocks on which data can be collected and shared digitally. The advent of secure online patient portals offers a way to share data with patients. With the growth of portals, patients can access their health information and communicate with their health care teams from the comfort of their homes and the convenience of their lives.

Health systems that promote transparency by offering patients remote data access have a desire to improve quality and safety and hope to gain efficiency. The use of online secure patient portals has been associated with higher levels of patient satisfaction and access to care. With emerging research demonstrating that individuals actively involved in their health and their health care achieve better health,[1] patient portals are poised to improve outcomes. Customarily positioned as information gatekeepers who operate through in-person encounters, clinicians are ever more expected to work in an environment of shared EHR data and virtual communication.

Almost 10 years ago, Kaiser Permanente introduced online access to laboratory test results, and currently, more than 7 of 10 members have registered for the kp.org website. Viewing laboratory results is the most frequent user activity, and this is followed by secure e-mail, medication refilling, and appointment scheduling. In a survey examining the emotional reactions of portal users who accessed laboratory test results online, responders felt high levels of appreciation, calm, and relief; few experienced worry, confusion, or fear.[2] The study was notable in that patients who had discussions with their provider about result expectations reported more relief and satisfaction and less confusion than patients who did not speak with their physicians before viewing their results.

OpenNotes is a growing initiative to provide patients online access to encounter notes. A prospective intervention at 3 large health systems found study patients engaged more in their care and reported benefits from note access. Initial concerns from participating providers were largely unfounded, and none elected to stop note access after the research had ended.[3] Although pathology reports have not typically been accessible through patient portals, this has not been the case at the Department of Veteran Affairs (VA). Long a leader in digital records, VA began opening patient access to EHR data in 2000. National implementation expanded in 2010 with laboratory results accessed through the Blue Button function. Full access to clinical notes and test results expanded significantly in January 2013. VA patients with online access can view data after a 3-day hold, and pathology reports can be accessed 14 days after completion. The experience of VA patients in accessing their EHR data mirrors the findings of OpenNotes research.[4]

Clinicians voice concerns about patients viewing data without their interpretation and are worried about increasing patient anxiety and workload. Apprehension intensified with the 2014 Department of Health and Human Services ruling allowing patients direct access to laboratory reports. However, missed test results are sure to continue despite provider alerts and established patient-feedback pathways. Shared data empowers patients and promotes self-care.[5] After all, there is no greater stakeholder than the person on whom the test was performed. Research suggests that patients who access their data can improve care quality. One VA patient, after reading an ultrasound report online, remarked, “It said re-do in 6 months, but that time came and went. I called the doctor[,] who says[,] ‘Yeah, it did say that.’ So if I didn’t call, it wouldn’t have got done.” Although open data are not a substitute for a requirement to communicate test results, patients are another set of eyes helping to ensure accountability.

With no evidence of a digital revolution slowdown, health care must leverage technology while simultaneously overcoming its resistance to changing the status quo. Clinicians need to embrace the reality of open data, even in the absence of providers’ explanations. Pathologists should always be mindful that their documentation is read and downloaded by patients. Language must be clear and nonjudgmental, and standard nomenclature should be used when appropriate. These principles should also apply to clinical notes and communication between clinicians in the EHR. Diagnostic uncertainty will exist and continue to engender worry. Patients do not expect simplicity or nonmedical language, but they do want and expect transparency.

In his book The Patient Will See You Now: The Future of Medicine Is in Your Hands,[6] Dr. Eric Topol, a cardiologist and Director of the Scripps Translational Science Institute, offers a powerful vision in which health data are democratized and widely available, patients and clinicians work together as partners, and technology is harnessed to meet people’s needs in a cost-effective fashion. With shared health data, the genie is now out of the bottle.

References
1. Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32:207-214.

2. Christensen K, Sue VM. Viewing laboratory test results online: patients’ actions and reactions. J Particip Med. 2013;5:e38.

3. Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157:461-470.

4. Woods SS, Schwartz E, Tuepker A, et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Internet Res. 2013;15:e65.

5. deBronkart D. How the e-patient community helped save my life: an essay by Dave deBronkart. BMJ. 2013;346:f1990.

6. Topol E. The Patient Will See You Now: The Future of Medicine Is in Your Hands. Philadelphia, PA: Basic Books; 2015.

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Atul Gawande on healthcare: 15 Cooks in the Kitchen and Nary a System in Sight http://www.sharedhealthdata.com/2015/04/10/atul-gawande-on-healthcare-today-15-cooks-in-the-kitchen-nary-a-system-in-sight/ Sat, 11 Apr 2015 03:47:45 +0000 http://www.sharedhealthdata.com/?p=2016 Maine’s Quality Counts! just had their annual conference. The statewide aggregator for health improvement, blessed with great leadership, partnership and a following, did a fantastic job getting 1,100 people there and bringing in phenom speakers.

A conference highlight was Atul Gawande @AtulGWande. Dr. Gwande, renowned in healthcare and quality circles, a surgeon at Brigham and Women’s Hospital, writer for The New Yorker magazine and best-selling author of 3 books (Better; The Checklist Manifesto; and Being Mortal: Medicine and What Matters in the End).

You can watch his full Quality Counts! presentation on YouTube:

Gawande talked about how healthcare has become so sophisticated, with 4000+ procedures and 6000 medications (is that all?), has tremendous science, with a capability to provide care to almost every person in every town. Yet we continue to drive up costs and resource use. He said that in 1970, for patients with pneumonia and heart attacks, it took 2.3 FTE of care. Now for the same patients, we need 15 FTE. 15 people who all know the plan. We’ve become specialists – but silo’d, and separated from communities. Most importantly, we don’t really have a system. We have to put health and healthcare together.

We have extraordinary technology. We are the best trained, over-educated, but with no sense of how it comes together.

Gawande spoke about how we’ve become obsessed with having the best components in healthcare. But patients may not necessarily care about living longer. How do we find out what people really want? Their goals? Priorities? Then he said an amazing thing: ASK THEM.

To do this, we as health professionals need to stop talking. We have to stop being “explainaholics“.

Some of his comments had inherent tensions. Data, measurement, quality, checklists. Then, he mentioned rigid rules for older folks in nursing homes. Rules for eating. Rules for movement. Rules for behavior. He noted what people want is to optimize their autonomy, as long as they can. Being able to eat a cookie (or have a refrigerator to open when they want) can be a simple solution with key rewards. Tangible and intangible, if you ask me.

Can we measure and focus on data, at the same time also really care? I think we have some ways to go. To measure what people value, rather than to value what we measure

Gawande had some great things to say about Maine, where we have some great improvement efforts and tremendous collaboration.

I look forward to curling up and reading Being Mortal, which I picked up at the conference. I don’t mind, though, that he slipped out of the Civic Center before he signed my copy. It was a treat to have him in Maine. To Lisa Letourneau, Director of Quality Counts: strong work, girl! 😉

Read – Jackie Farwell’s post, What Atul Gawande, medicine’s rock star, thinks about Maine health care

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My research buddies at the NIH mHealth Institute (#mHealth14) http://www.sharedhealthdata.com/2014/12/31/my-research-buddies-at-the-nih-mhealth-institute-mhealth14/ Wed, 31 Dec 2014 15:59:26 +0000 http://www.sharedhealthdata.com/?p=1988 This year at the mHealth Summit, I opted to attend the 2014 NIH mHealth Institute pre-conference. This 2-day session, lead by Dr. Wendy Neilson (@WendyNilsen) from NIH’s Office of Behavioral and Social Sciences Research, gives a view of app thinking from the perspective of research, focusing on ways to use and study mHealth apps for change. This space is so important but not easy to do. Developers tend to focus on functionality, researchers on populations and study questions. mHealth research has to be practical as technology moves swiftly. No 3-year randomized control trials need apply. True transdisciplinary efforts must create agile approaches done in scientifically robust ways.

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Alain Koffi, MD, PhD, Johns Hopkins Bloomberg School of Public Health; Susan Woods, MD, MPH, Veterans Health Administration (@SueWoods), Linda Park, PhD, FNP-BC, U. California San Francisco; Dayo Ajayi-Obe, MD, SM, Imperial College Healthcare NHS Trust; Donna Spruijt-Metz, MFA, PhD, U. Southern California and NIH mHealth Institute Faculty (@metzlab); Amy Dunaway, MPH, MA, U. Missouri; Brad Tritle, CIPP, vitaphone e-health solutions (@BTritle); Zdenek Gutter, PhD, Czech National eHealth Centre, Stimcare; Sumal Nandasena, MD, MSc, MBBS, Sri Lanka Ministry of Health. Not in photograph: Robyn Stremler, RN, PhD, U. Toronto; EunSeok (Julie) Cha, PhD, MPH, RN, Emory University.

The best part of the experience was that it was shared. We worked in small groups at round tables coming up with problems to solve, and ideas and methods to study them. Our international group was collaborative, theorizing about serious stuff: pregnant women waiting for Medicaid eligibility assessment. What did we come up with? We decided to give women a smart phone, loaded with our ‘study app’ – connecting users to one another and to community information (Why not? It’s reasonable to think that handing out technology can improve health and cut costs, too). We were interested in studying effects of social networks and access to virtual resources — developed based on what was important in the women’s lives and designing to fit their needs. Lecturer “Billie” Nahum-Shani demonstrated her sharp methodology expertise, pushing us to ramp up our science-thinking.
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We probably won’t write a proposal together, but some are sure to pursue mHealth research funding in 2015. We had fun thinking about how to dig into a rapidly growing field and learned from all the speakers. Thanks to all the mHealth NIH Institute faculty (check here for future trainings). Our group gives special appreciation goes to Donna Spruijt-Metz, who kept us on our toes our 2nd day group facilitator – thanks, Donna!

Wouldn’t it be fun for this group to come back together — like Oprah — in 5 or 10 years and see what everyone’s up to? Let’s stay in touch, team!

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Open Notes research: VA patients find their clinical notes helpful and don’t bother doctors much. http://www.sharedhealthdata.com/2014/11/30/open-notes-research-va-patients-find-their-clinical-notes-helpful-and-dont-bother-doctors-much/ Sun, 30 Nov 2014 21:17:23 +0000 http://www.sharedhealthdata.com/?p=1971 A new research study on OpenNotes, one I’ve had the joy to be part of, has been published in the Journal of the American Medical Informatics Association (JAMIA). VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes, by colleagues Kim Nazi, Carolyn Turvey, Dawn Klein and Tim Hogan, describes views of users of the VA’s personal health record MyHealtheVet. feat_bluebutton

MyHealtheVet has offered patient access to their electronic health record through Blue Button since 2010. In January 2013, that access exploded to include clinical notes. All the notes. Primary care, specialty medicine, mental health. Patients could also see reports of tests – from Xrays to CT scans to lab results. These can be seen 3 days after completion (except Pathology has a 14 day hold).

How are patients using access to clinical notes? What do they find? Do they contact their doctor? This study presents findings from the first 9 months patients could access clinical notes. Users find reading doctors’ and nurses’ of benefit, help explain things and reinforce discussions from visits. Most use the information on their own, with few contacting their doctor.

3 out of 4 patients did not contact their provider after reading notes, because they had no reason to. Patients planning to contact their provider wanted to learn more about a health issue, medication, or test result, or get an explanation about something in the note.

Read the full paper, PDF here, for detailed results from more than 28,000 who responded to the survey on the MyHealtheVet website June – September 2013. Here’s a few of the most interesting findings:

Among 6,810 who said they accessed VA Notes, approximately:
– 72% are age 60 or older
– 73% read the notes, 26% downloaded a copy and 11% shared notes with others
– Just under 6% discussed the notes with a VA provider or care team member
– 75% had no plans to talk to the provider
– 82% who didn’t plan to talk to provider said they had no reason to do so
– Of those who planned or did talk to provider, 87% do so to learn more

The study results offer more glimpses into this new world of OpenNotes. While some patients clearly feel that talking to their doctor about the notes ‘bothers them’, a few feel that provider discussion is needed to ‘correct’ the notes. I believe full transparency is absoutely the right thing to do, yet does require new kinds of thinking and acting. Notes have to be written with the patient and family in mind. Yet we need to go beyond the idea of acceptance, toward fully embracing such a shared contribution. OpenNotes are a great Shared Health Data journey – one I’m sure we’ll look back on and chuckle, wondering what all the fuss was about. Let’s get there now.

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Welcome Home to Portland Maine. http://www.sharedhealthdata.com/2014/08/27/welcome-home-to-portland-maine/ http://www.sharedhealthdata.com/2014/08/27/welcome-home-to-portland-maine/#comments Wed, 27 Aug 2014 14:00:08 +0000 http://www.sharedhealthdata.com/?p=1953 I took a very long pause writing posts. Hey, it just happened. Life got busy. I moved. Both kids got planted in college life. And I’m firmly embedded back in New England.

I love Portlands. My first time living in Portland, Oregon was in ’79. It was way smaller then. Got a job in a research lab at the VA – #1 of several VA jobs. Then med school at OHSU, and primary care residency in Rhode Island. It didn’t take long to run back to the Northwest – with all the 365/24/7 green and those mountain glaciers. Learned to love rain. Came to Portland, Maine in ’97 – to combine research, practice improvement and medical education.

I soon met Richard Rockefeller, who introduced me to patient computing before most people owned a computer. He opened my eyes to possibilities of technology for health care and patient partnership. He was insightful, a pioneer with vision to see how the internet would create stronger partnerships between patients and health providers. I met him years ago when he began Health Commons Institute, a Maine non-profit that spread the word about patient-computer-provider opportunity. He participated in the seminal effort of Healthcare in a Land Called People Power: nothing about me without me. Richard introduced me to informatics, and was single-handedly responsible for shifting my career trajectory. I was fortunate to gain his support to study patient use of an early personal health record at Martin’s Point in Brunswick, Maine. Screen Shot 2014-08-27 at 3.04.29 AM The take home: people with chronic conditions used the portal as often or more often than the ‘worried well’ (those not with a chronic condition). That study was published in J. Medical Internet Research in 2004, “Using Claims Data to Examine Patients Using Practice-Based Internet Communication: Is There a Clinical Digital Divide?” These results were enough for me: I returned to Oregon for formal medical informatics education.

Now I’ve returned to Maine. The end of Portland-to-Portland transitions.

It was devastating to learn a few months ago about his tragic death. The world lost a wonderful creative soul and pioneer, passionate about improving peoples lives and connecting one another through the use of digital tools.
Richard, you are sorely missed, RIP.

The Society of Participatory’s Michael Millenson wrote a lovely blog post about Richard.

There’s great innovation happening here, and I look forward to jump into the fray. VA Maine and the VA Office of Rural Health recently embarked on connecting with the statewide health information exchange, HealthInfoNet. Maine’s HIE is a national leader, with aggregated data on the great majority of residents from all hospitals and most care sites. Using an opt out model, clinicians from across the state have real-time data at their fingertips. I look forward to helping with clinical adoption at Maine VA, and learn much more about shared health data that’s actionable for clinicians.

Next stop: HIE facing the consumer? Maybe not today. It’s still summer, the sun is shining and it’s a good day for a quick kayak in Casco Bay. Always nice to be on the water in Maine, but sad that there’s one less sweet soul with whom I planned to reconnect.

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HIMSS and HERS – On The Cusp Of Something Big http://www.sharedhealthdata.com/2014/02/28/himss-and-hers-on-the-cusp-of-something-big/ http://www.sharedhealthdata.com/2014/02/28/himss-and-hers-on-the-cusp-of-something-big/#comments Sat, 01 Mar 2014 02:15:38 +0000 http://www.sharedhealthdata.com/?p=1920 HIMSS 2014 just wrapped up in Orlando. My 4th HIMSS in 6 years, I found the usual: crowded, vendor centric, sterile massive location. Food was costly and not healthy. My feet hurt. Typical, right?

But there were also diamonds, too – real signs of great things emerging. Namely, more women, more patient & consumer focus, and maturing capabilities where new models of care will blossom. Here’s some thoughts..

HIMSS Holliday HIMSS and HERS


1. Women are in the Health IT House!
We’re hearing from, and following more women in #Health IT – and it’ll keep going. Artist, Patient Advocate & worldwide speaker Regina Holliday set up her easel at the Connected Patients and Families Center and said, “Why HIMSS? What about HERS?” Reggie always reminds us of who we are and where we need to go. Her painting is comical while it cuts to the chase!

Former Secretary and Senator Hillary Clinton gave a rousing plenary to a packed crowd, talking about her healthcare journey and boosting attendees’ confidence that the health IT field will help improve health care while making it easier for patients and families to have a better experience. I’m optimistic but worry about HIT adding costs, something she didn’t mention. I suspect most of us were surprised when she gave us insightful fireside comments on geopolitical events. She ended by reminding us that women have come along way, but work is far from done. She recently launched No Ceilings, a project to support full participation of women and girls in the 21st century.
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Many other women champions and thought leaders were at HIMSS14, too many to list. A few in the public sector include the VA’s Theresa Cullen, ONC’s Judy Murphy and Lygeia Ricciardi, and of course new National Coordinator Karen DeSalvo. In the private sector, women leaders such as Humetrix CEO Bettina Experton are fierce and visionary but way too scarce.

More to Go: We need more women leading HIT companies, on Boards and advisory teams. Men: Hilary Clinton said that everyone plays a role and that everyone benefits!

2. Patients and Caregivers pounded the HIMSS Runway.
The Connected Patients and Families Learning Gallery was incredible. In the vendor area was significant square footage, carpet, lounge chairs, a big screen and continuous presentations. Consumer Voice is still modest compared to Big Software, Big Hardware and Big Data…but it is getting watered! With HIMSS also announcing the Connected Patient Committee – participatory design is set to grow. HIMSS Senior Director Mary Grizkowitz has been a passionate leader driving Patient Voice and participatory medicine at HIMSS. Other champions include Kate Berry, Leslie Kelly-Hall, Kate Christensen, Laura Adams and so many others. 
HIMSS Connected Patient view

More to Go: Connected Patients & Families gets a central location inside the Vendor area, co-located with patient-facing tools. 

3. Data exchange is finally trickling down to the consumer. I spend time learning what people want from health care and thinking about solutions to meet these needs. Consumers, patients and families don’t necessarily say ‘I need a list of my meds and allergies’ but do say, ‘help me take care of myself, and don’t make it hard for me to get information.’ A big part of that is health record access – shared records. ePatient Dave DeBronkart gave a talk Let My Data Go! in the Interoperability tent == a very high visibility area at HIMSS. He adeptly advocated for Blue Button and OpenNotes. Way to go, Dave!

More to Go:
all I can say is, Move Over Moses – Let our data go (and be entered!)

There was so much information and chats at HIMSS (and HERS!) that it’ll take time to digest, review and follow-up. At least my feet are OK now, and I just had a salad for dinner. 🙂

Regina Holiday’s slides can be found here.

Danny van Leeuwen and MaryAnne Sterling’s slides focused on Caregiver Contributions can be found here.

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