Improving Maine’s health, MaineHealth stays focused on data

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.

Going Mainstream: Online Sharing of Test Results With Patients

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.