"patient engagement" entries

Citizens as partners in the use of clinical data

A Knowledge Currency Exchange for health and wellness

This article was written together with Mike Kellen, Director of Technology at Sage Bionetworks, and Christine Suver, Senior Scientist at Sage Bionetworks.

The current push towards patient engagement, when clinical researchers trace the outcomes of using pharmaceuticals or other treatments, is a crucial first step towards rewiring the medical-industrial complex with the citizen at the center. For far too long, clinicians, investigators, the government, and private funders have been the key decision makers. The citizen has been at best a research “subject,”and far too often simply a resource from which data and samples can be extracted. The average participant in clinical study never receives the outcomes of the study, never has contact with those analyzing the data, never knows where her samples flow over time (witness the famous story of Henrietta Lacks), and until the past year didn’t even have access to the published research without paying a hefty rental fee.

This is changing. The recent grants by the Patient-Centered Outcomes Research Institute (PCORI) are the most visible evidence of change, but throughout the medical system one finds green shoots of direct patient engagement. Read more…

Comment

OneHealth: Combining Patient-Generated Data With Communities and Feedback Loops

Evolution from a research tool to a platform for patient engagement

Bruce Springer of OneHealth will speak about this topic at the Strata Rx conference. This article was written by Patrick Bane of OneHealth in coordination with Bruce Springer.

According to a recent study performed by the Jesse Brown VA Medical Center and University of Illinois at Chicago, patient-centered care has demonstrated positive outcomes on patients’ health, patients’ self-report of health, and reduced healthcare utilization. The study’s results are consistent with previous research that the patient-centered care model improves the quality of care while simultaneously lowering the cost of care.

OneHealth’s behavior change platform extends the patient-centered model by connecting members anytime, anywhere through mobile and web applications. Member generate data in their daily lives, outside of a clinical setting, which creates a much richer dataset of behaviors that are required to understand the patients’ condition(s), and their readiness to change. Members freely choose what to do and their choices actively generate data in five classes of information:

Read more…

Comment

How to bend fate in the health care field

Data that matters to patients

This article is by guest author Amik Ahmad. He is speaking on this topic at Strata Rx.

Distractions didn’t have a chance. My phone was devoid of reception. The New York Times mobile application searched impossibly for a Wi-Fi connection. Conditions perfect for focus: away from a world always on and connected, noisy, and belligerent with information overload. I could have found joy in a single byte. But instead, I was pushed to the limit of sensory deprivation, and I teetered on the edge of insanity. I spent nine hours of my life in a hospital waiting room.

Read more…

Comments: 3

Combining personal data with ratings for targeted medical information

HealthTap refines the answers returned to specific health queries

HealthTap is a community of doctors and clients seeking answers to health questions. Its central service provides immediate access to doctors and their knowledge either by doctors answering client questions in real time, or through a large database of previously answered questions and answers from doctors that are peer reviewed and tagged with recommendations by other doctors. By combining the doctors’ recommendations with data provided by each client on himself or herself, HealthTap provides customized results to queries. In this video, HealthTap CEO Ron Gutman explains unexpected lessons they’ve learned from offering the intelligent search service.

Read more…

Comment: 1

Ginger.io: Putting the Patient-Provider connection at the center

A tool for outreach to patients produces unexpected benefits

This posting was written by guest author Julia Bernstein of Ginger.io. Ginger.io’s CEO Anmol Madan will be speaking on this topic at Strata Rx.

The traditional, office-based model for health care is episodic. The provider-patient relationship exists almost completely within the walls of the exam room, with little or no follow-up between visits. Data is primarily episodic as well, based on blood pressure reading done at a specific time or surveys administered there and then, with little collected out of the office. And even the existing data collection tools—paper diaries or clunky meters—are focused more on storing data that on connecting the patient and provider through that data in real time.

There is no way to get in touch when, for instance, a patient’s blood sugar starts varying wildly or pain levels change. The provider often depends on the patient reaching out to them. And even when a provider does put into place an outreach protocol, it is usually very crude, based on a general approach to managing a population as opposed to an understanding of a patient. The end result is a system that, while doing its best within a difficult setting, is by default reactive instead of proactive.

Read more…

Comment

Ways to put the patient first when collecting health data

Report from 2013 Health Privacy Summit

The timing was superb for last week’s Health Privacy Summit, held on June 5 and 6 in Washington, DC. First, it immediately followed the 2000-strong Health Data Forum (Health Datapalooza), where concern for patients rights came up repeatedly. Secondly, scandals about US government spying were breaking out and providing a good backdrop for talking about protection our most sensitive personal information–our health data.

The health privacy summit, now in its third year, provides a crucial spotlight on the worries patients and their doctors have about their data. Did you know that two out of three doctors (and probably more–this statistic cites just the ones who admit to it on a survey) have left data out of a patient’s record upon the patient’s request? I have found that the summit reveals the most sophisticated and realistic assessment of data protection in health care available, which is why I look forward to it each year. (I’m also on the planning committee for the summit.) For instance, it took a harder look than most observers at how health care would be affected by patient access to data, and the practice of sharing selected subsets of data, called segmentation.

What effect would patient access have?

An odd perceptual discontinuity exists around patient access to health records. If you go to your doctor and ask to see your records, chances are you will be turned down outright or forced to go through expensive and frustrating magical passes. One wouldn’t know that HIPAA explicitly required doctors long ago to give patients their data, or that the most recent meaningful use rules from the Department of Health and Human Services require doctors to let patients view, download, and transmit their information within four business days of its addition to the record.

Read more…

Comment

The elusive quest to transform healthcare through patient empowerment

We need to provide data to patients in a form they can understand

Would you take a morning off from work to discuss health care costs and consumer empowerment in health care? Over a hundred people in the Boston area did so on Monday, May 6, for the conference “Empowering Healthcare Consumers: A Community Conversation Conference” at the Suffolk Law School. This fast-paced and wide-ranging conference lasted just long enough to show that hopes of empowering patients and cutting health care costs (which is the real agenda behind most of the conference organizers) run up against formidable hurdles–many involving the provision of data to these consumers.
Read more…

Comment

Saint James Infirmary: checking the pulse of health IT at HIMSS

Signs of the field's potential along with self-imposed limits

I spent most of the past week on my annual assessment of the progress that the field of health information technology is making toward culling the benefits offered by computers and Internet connectivity: instant access to data anywhere; a leveling of access for different patient populations and for health care providers big and small; the use of analytics to direct resources and attack problems better.

The big HIMSS conference in New Orleans, a crossroads for doctors, technologists, and policy-makers, provided a one-stop check-in. I already covered several aspects of the conference in two earlier postings, Singin’ the Blues: visions deferred at HIMSS health IT conference and Slow & Steady: looking toward a better health IT future at HIMSS. Here I’ll summarize a couple more trends in data exchange and basic functions of health IT systems.

Read more…

Comment

Slow & Steady: looking toward a better health IT future at HIMSS

Participatory medicine and hospital technologies take steps forward

After my funereal disparagement yesterday of the opening of the HIMSS health care conference in New Orleans, I decided to pick up the beat today and talk about some of the people and ideas I encountered with promise for the future.

Nobody Knows The Way I Feel This Morning: patient engagement and all that jazz

Yesterday I spoke of the gap between the reform-minded leaders of health care and the institutions that mostly take care of us. The latest battleground between these peaks of care is the movement variously called patient engagement, patient empowerment, and participatory medicine.

There’s nothing new about this concept. Desperate patients have been self-educating, negotiating with health care systems, and creating advocacy groups forever. On the self-help front, Prevention Magazine began (according to Wikipedia) in 1950. The Society for Participatory Medicine was founded in the mid 2000’s, around the time e-Patient Dave made the concept into a meme through his brave online sharing of his care.

HIMSS has thrown its support behind the Society for Participatory Medicine, which had a lunchtime meeting at the conference yesterday to discuss increasing membership and grass-roots promotional activities. (Folks, consider yourselves promoted.) HIMSS also invited teh popular author Eric Topol to deliver yesterday’s keynote. And the first statement offered by Topol was praise for Regina Holliday, a consumately self-educated patient advocate and creator of the famous artwork and painted jackets in the Walking Gallery. Read more…

Comment: 1

Singin’ the Blues: visions deferred at HIMSS health IT conference

The main concerns of health reformers don't rise to the top of health provider agendas

HIMSS, the leading health IT conference in the US, drew over 32,000 people to New Orleans this year (with another thousand or two expected to register by the end of the conference). High as this turn-out sounds, it represents a drop from last year, which exceeded 37,000.

Maybe HIMSS could do even better by adding a “Clueless” or “I don’t believe in health IT” track. Talking to the people who promote health IT issues to the doctors and their managers, I sense a gap–and to some extent, a spectrum of belief–in the recognition of the value of gathering and analyzing data about health care.

I do believe that American health care providers have evolved to accept computerization, if only in response to the HITECH act (passed with bipartisan Congressional support) and the law’s requirements for Meaningful Use of eleectronic records. Privately, many providers may still feel that electronic health records are a bad dream that will go away. This article presents a radically different view. I think electronic health records are a bad dream that will go on for many years to come. I’ll expand on this angle when blogging from HIMSS this year.

Read more…

Comments: 2