From social media to better health

By Katherine Kim, San Francisco State University, iN Touch Principal Investigator.

Social media are media disseminated through social interaction that transforms content consumers into content producers (aka user-generated content).  For example, in our project iN Touch, youth are not just consumers of clinical data given to them by the care team, but they become creators of ODLs that are used by the care team.  This creates a small social network in which each of the members has equally valuable knowledge, influence, and authority. 

Which mobile devices do teens use?

We are using an app customized from The Carrot.com on iPhone and iPod Touch.  We selected the iPhone/iPod as our social networking device because they are the most commonly used among youth.  And for youth with limited disposable income, the iPod Touch is more accessible because it doesn’t require payment for a data plan.

 

How do teens use their mobile devices?

Not only are youth using these devices for calls, web browsing, texting, but they are also using applications extensively. Using data from tech.fortune.cnn.com from Dec. 2009, I estimated that 3.16 million youth (up to 24 years old) are using iPhone/iPod Touch in the U.S. and they are downloading 30.8 million apps per month.

What kinds of apps are they using? 

148apps.biz breaks down the apps available in the App Store and about 6,700 currently are health & fitness or medical.  This pales in comparison to number of the games, entertainment and books which is over 80,000. The health & fitness apps are targeted at consumers and help track blood pressure, weight or other data relevant to an illness.  The medical apps target providers and offer mobile electronic medical records, medical resources and guides.  A recent report by the California Healthcare Foundation gives a nice overview of uses of smartphones for health.

How well are we leveraging the social network?

The question I have is with so many people using smartphones, how much are we taking advantage of the social network among patients and providers? And, how can healthcare be improved by having providers learn from consumers?

I spoke at a recent conference at UC Berkeley, 21^st Century Tools for Healthcare Leadership.  I asked the keynote speaker Tessie Guillermo of Zero Divide whether she had seen examples of this.  The example she gave was from the relief effort in Haiti.  She noted that it was text messages from residents, in part, that helped the Red Cross determine greatest areas of need and prioritize resources.  We’d love to hear your examples too.

Engaging teens

While we conduct our iN Touch project, we’ll be integrating social media into the clinical workflow.  But, that may not go far enough.  We’ll have to pay attention to if, how, where, and why teens engage with our app.  We want to uncover what successful gaming, entertainment and book apps have that health & fitness apps don’t.  Then use that knowledge to adapt our healthcare delivery model to best fit those needs.  

I think that would be a powerful use of social media.

Got measures? Evaluation approaches and challenges

By David K. Ahern, RWJF Aligning Forces for Quality.

On March 26^th, I presented via tele-video conference on approaches to evaluation for the Project HealthDesign grantees who were participating in a workshop at the Center for Better Health at Vanderbilt.  Despite some trepidation about the technology not working, it seemed to go well.  I think we will use it more often in our work with the RWJF Aligning Forces for Quality program going forward.  

The focus of the talk was to promote both qualitative and quantitative methods appropriate for the type, scope, and nature of the projects.  It was a lively session that included an exercise for the grantees to generate and discuss possible evaluation approaches to a hypothetical project scenario.  The biggest challenges that emerged were: (1) measures that would be cross-cutting and (2) integration of ODLs into the clinical enterprise. 

With respect to measures, in addition to including condition-specific instruments relevant to each of the individual projects, patient and provider engagement and activation received much attention.  I suggested Judy Hibbard's Patient Activation Measure (PAM) as one option that seemed to make sense across all projects since one goal is to engage or activate patients to monitor and report ODLs. What other measures are available to capture this critical dimension?

The questions of “Which providers will manage the ODLs” and “What will these providers do with the stream of ODLs” were another topic of discussion.  Assuming we can address these fundamental questions then the need for a measure emerges.  How can we assess adoption and uptake by providers of these new data streams?  

Maybe I need new glasses? Blurring the lines between PHR and EHR

By Barbara L. Massoudi, RTI International, BreathEasy Principal Investigator.

For the past few years whenever I’ve given presentations about PHRs and EHRs I’ve made an upfront distinction between the two by saying that PHRs are patient-centered and patient-controlled, while EHRs are provider-centered and provider or institutionally controlled. I think it might be time to update my slides…

Last week AHRQ released a request for task order under the National Resource Center for Health Information Technology requesting proposals to help improve patient literacy of EHRs. At first glance this seemed perplexing. Why would patients be using EHRs and what would they be using them for? It’s been tough enough getting clinicians to acknowledge that patients can be the recipients of information about their health through PHRs and patient portals.

EHRs as a Patient Education Tool
It turns out that AHRQ wants proposals related to making the patient education materials provided through EHRs more accessible to patients of all health literacy levels. Much of the patient education materials accessible through EHRs, if they even exist, fail miserably when measured against current health literacy strategies like chunking information and writing at a sixth grade or lower reading level. And yet, providing patient education at the point of care to reinforce information shared during the office visit makes good sense. EHRs might even become an interactive tool, providing diagrams, videos and other visual aids to increase comprehension and information retention.

Making it Meaningful
The meaningful use movement focuses on making health information available at the point of care to facilitate better clinical decision-making. Although CMS acknowledged that “Providing patients with information and education that is relevant to their condition, actionable, culturally competent, and of the appropriate health literacy level is a critical component of patient engagement and empowerment,” objectives related to this were not part of the proposed meaningful use rule because materials just don’t exist right now. The AHRQ work should be a great start to developing and promoting recommendations to improve EHR patient education related capabilities and features. Add to this a system by which you can accurately rate the clarity of health information and a repository of actionable health education materials developed specifically for use with EHRs and we’re headed in the right direction.

What are your Thoughts?
Our hope within Project HealthDesign is that observations of daily living will enhance PHRs by transforming them into springboards for action and improved health decision-making. It seems like this new EHR work can help benefit the PHR and patient portal world as well. What do you think?

A good start to make HIT use meaningful to patients!

By Patricia Flatley Brennan, Director, Project HealthDesign

At the Meaningful Use Workgroup of the Health IT Policy Committee (ONC), a disparate set of voices sang as one choir. It is possible, even necessary, to use HIT innovations to engage, educate, and empower patients and their lay care partners.

Singing from the same page is a necessary starting point, and here are some points of agreement I came away with:

• A person should have full access to their health data regardless of where it is generated.

• Person-generated health data includes both information directed by clinicians and obtained by patients (like daily weights or home blood pressure) as well as person-defined data (like sleep adequacy or the ability to walk to the grocery store).

• Data should be available in machine computable form, not just in human readable form.

Here's where more work needs to be done:

• Should data obtained in the home (e.g. with a home glucometer) or created by the patient (e.g. what I ate for dinner) be noted as such in the electronic record?

• In order of priority, what patient generated data should be included in the electronic health record?


• How can the benefits of meaningful use be extended to provider groups like visiting nurses, community drug treatment facilities, and other “social health” providers whose services may be the key to insuring appropriate use of health services like ERs and hospitals?

We at Project HealthDesign believe that three things are necessary to achieve the benefits intended by the meaningful use incentives:

• Health information technologies and policies that enable information selected and gathered by patients to be integrated into clinical care

• Health information that is accessible to patients in a computable form

• Health information for patients must be actionable

You can read my full testimony here. Audio of the complete hearing as well as links to testimony given by others can be found here under the April 20 meeting date. I commend Chairs Tang and Hripsak, and the workgroup, for bringing the patient into the loop. Meaningful use should result in improved health for all, and it is clear that full engagement of patients is a necessary first step!

Tackling Legal and Policy Issues Associated with ODLs Integration

By Bob Belfort, Manatt Phelps & Phillips, LLP

Integrating observations of daily living with clinical practice workflow raises a number of legal and policy issues. Manatt, along with Deven McGraw at the Center for Democracy and Technology, is excited to be serving as legal and regulatory compliance consultants for Project HealthDesign to help navigate these challenges. The lessons we learn from analyzing these and other issues will help to inform the ever-evolving federal and state policy landscape governing exchange of ODLs and other information through PHRs. We will be identifying, collaboratively, a series of policy issues - and potentially crafting solutions to those issues - that will help to ensure more robust integration of patient-generated data into clinical workflow in the future. 

Our analysis is currently focusing on:

Privacy and Security
In Project HealthDesign, ODLs are flowing from the patient through portable electronic devices to data repositories maintained by research institutions or PHR vendors such as Microsoft or Google. Providers are then accessing the ODLs in these repositories in different ways. In addition, the reliance by many of the projects on portable devices maintained by patients means paying special attention to minimizing security risks in environments that are outside of the researchers’ control, an area most health care providers have not previously confronted. 

To address these and other privacy and security issues, we will be evaluating the implications of existing state and federal laws governing the privacy of health information. Some of the key legal issues applicable to the grantees’ research studies include:

• Ensuring patient authorization forms satisfy HIPAA and the patchwork of state laws.
• Minimizing security risks associated with loss or theft of, or improper access to, portable devices.
• Properly verifying subject identity.
• Ensuring transmission security of information between portable devices and other computer systems.
• Facilitating compliance with potential mandatory reporting obligations triggered by receipt of ODLs.

Concerns beyond Legal Compliance
Our obligation, however, goes beyond pure legal analysis. It includes providing policy advice even when there is no specifically applicable law. For example, it may be prudent to apply the same security standards to unregulated data that are applied to data that is subject to HIPAA. After all, in the event of a security breach, it is unlikely that the lead paragraph of the news story will be that the HIPAA security rule was inapplicable.

Risk Management
We will also be providing guidance on the risk management issues faced by providers in using ODLs.  Providers are concerned about an implied obligation to review ODLs that might be available to them. What if they overlook something critical? Can they rely on this type of information to make treatment decisions?  This is a new issue for providers, where standards of care are still evolving.

As we work through these issues we’ll be writing monthly blog posts. In the meantime, if there are any legal or regulatory concerns nagging at you, please comment below so we can have a look!

Listening to the Expert

By Patricia Flatley Brennan.

We repeatedly hear of health professionals discounting patient self-report. Denise Grady's article in the New York Times, In Reporting Systems, Don't Patients Know Best?, brings a new perspective into the conversation. What patients are EXPERT on is their own experience - what is sometimes perplexing to clinicians is that the words and phrases lay people use to describe those experiences may not accurately 'map' to the terms clinicians are familiar with. Indeed, in some cases the experience of patients is just that, their experience, and it may or may not have any direct alignment with the signs and symptoms indicative of the disease process the clinician is considering as they evaluate the 'validity' of the patient experience. 

In Project HealthDesign, we understand observations in daily living (ODLs) to be indicators of a person's experience that alert the person to take action (call the clinician, exercise more, adjust their fluid intake, etc.). Across our five Project HealthDesign teams, clinicians, patients and designers are taking a 'deep dive' on these ODLs  - figuring out what indicators people attend to, how computerized tools can make the capture and interpretation of them easier, and, importantly, what do these ODLs tell clinicians and their patients about the person's health state.  ODLs may align well with clinician-recognized signs and symptoms, or they may serve as companion sentinels to the person to take action.  Just because we might not understand them immediately doesn’t mean we should ignore them. We need to use them for what they are: indicators that something is going on related to our health!

Are There ODLs in Diapers?

By Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator.

The Project HealthDesign blog is supposed to offer a “behind the scenes” view of our research. Well, right now, in the FitBaby project we are working on trying to figure out whether—and how—we can sense anything and everything about babies pooping. Fifteen years ago when I first entered the field of computer science I never thought I’d be here.

Let’s back up a little bit. We have been interested in measuring the ambient gases in the home to try to make some connections between infant comfort, health, and wellbeing and any potential contaminants in the air. One of our team members, Sen Hirano, a graduate student at UCI has a passion for tinkering.  Sen can often be found in the lab late at night soldering together something or another. 

A few weeks ago Sen came in to my office and informed me that he was pretty sure he could sense “flatus” using the air sensors we had bought. I nearly fell out of my chair. Once the surprise wore off, I asked him to show me his sensor streams, visualize the various gases he was sensing on his computer, and get, well, a bit more “sciencey” about the whole thing.  It seemed that our methane sensor was spiking a bit at the expected times, which made sense given our limited knowledge of the human excrement system. So, we began to talk about the idea that we could sense baby poops and baby gas in the crib using just our tiny gas sensors.

A few days later, on Sunday morning, I got an instant message from Sen. I think the conversation speaks best for itself:
 
Sen: The major components of the flatus, which are odorless, by percentage are:
Nitrogen: 20–90%
Hydrogen: 0–50%
Carbon dioxide: 10–30%
Oxygen: 0–10%
Methane: 0–10%
Sen: Maybe I chose the wrong gas
Gillian: Nitrogen! Really? Can we sense that?
Sen: idk
Sen: I'm about to start looking
Sen: For example, in one study of the feces of nine adults, only five of the samples contained archaea capable of producing methane. Similar results are found in samples of gas obtained from within the rectum.
Sen: Hmmm
Gillian: Interesting
Sen: The thing is that it's still working?
Sen: But the lack of methane in some places might be troublesome
Sen: Though since these sensors are also sensitive to other gases it might be okay?
Gillian: Well that’s the real question I suppose.  What else are the sensors picking up?
Gillian: See if you can find out what gases comprise baby poop when breastfeeding... i suspect it might be different from those in bottle fed babies
Sen: Hmmm
Sen: This is turning into a biology experiment
Gillian: Totally
Sen: Found it
Sen: http://journals.lww.com/jpgn/Fulltext/2001/05000/Gas_Production_by_Feces_of_Infants.9.aspx
Gillian: NICE
Gillian: That’s totally the right thing
Gillian: And funny
Gillian: All at once
Sen: lol
Sen: "I can tell the difference between breast fed and formula fed babies"
Gillian: Do we need new sensors for this super power of yours?
Sen: ha ha
Sen: Maybe...

Since that Sunday, we have gotten really serious about this idea.  We are starting to think that the potential to monitor this kind of detail about the baby digestive system could be incredibly interesting both clinically and in terms of basic science and research.  Parents are often concerned about their infant’s constipation or gassiness, but when asked, they cannot always remember the last “poopy diaper” nor how many feedings were bottles as opposed to breast fed. The color of poop might be a warning sign of trouble to come if the infant is bottle fed but totally normal if breast fed. The very gas contents themselves might even tell us something clinically relevant. At this point, we just don’t know, and that is very exciting.

At the same time, we think there may be some interesting computer science problems in here. We are in the process of doing controlled experiments to test our sensors and algorithms. Sen and I are lucky enough to have Monica Tentori, a post-doc in my lab, and Don Patterson, a fellow professor down the hall, both around to advise on the machine learning aspects of this work.  We keep ordering new sensors, soldering together interesting components, and yes, we are prepared to collect “poopy diapers” in sealed Tupperware to test out their gas production capabilities.  It promises to be an exciting time in our lab… and hopefully not too smelly of one.

Religious ODLs?

By Patricia Flatley Brennan.

This is the time of year where followers of the world's many religions celebrate their holiest of days. Years of research document the key role that religious affiliation, practices, and adherence plays in the lives of people with complex health problems, and mediates their experiences. Does this provide evidence that there are religious ODLs?

Maybe. And maybe not. The Project HealthDesign team recognizes that ODLs are the indicators, meaningful to a person, that inform him or her about their health state. So it is plausible (at least to me) that there could be religious ODLs. For example, whether or not a person attends a weekly religious service could in itself serve as an ODL, and may be an indicator of a variety of underlying phenomena, such as pain control, relief or exacerbation of depressive symptoms, or the accessibility of inspirational or emotionally supportive thoughts.

I don't think there are 'christian' ODLs, or Jewish ODLs  or Islamic ODLs but I do believe that there are ODLs that arise into awareness during intensively religious periods, like Easter, Passover or Christmas, that form the core of a type of observation in daily living that helps a person know how they are doing. What do you think?

ODLs and Patient Engagement

By Julie Murchinson, Health 2.0 Accelerator.

During the recent Project HealthDesign workshop, I was struck by the question of what ODLs have the potential to do to engage patients in their health. Will ODLs be the patient's true representation of issues they own and manage as part of their health or will they be factoids about patients that doctors use but patients don't truly own? Will ODLs management come naturally or will managing them be an arduous task for the unfortunate individuals who may "need" to manage them? Much remains unknown about the fate of ODLs, but there is strong potential for ODLs to be the patient engagement hook in the years to come.

Three big "ah-ha's" came to me as I listened to grantees develop, describe and integrate ODLs into their project plans.

1. ODLs development may depend upon the disease

As we know all too well, there are some diseases we understand well and some we do not. For those we know well, ODLs may be more "top-down" or centered around clinical relevance because healthcare providers feel they know what works best for the patient or for the efficiency of the treatment of that patient.  If we do not understand a disease well, ODLs may, in fact, be more "bottom-up" or grassroots in their development because they are more about disease discovery from each and every patient.  We may learn what makes the disease tick through the experiences and narratives of the patient.  We may discover an entirely new pattern or create a new way to help patients self-manage between visits based on the experiences of other patients.  ODLs in the world of little clinical evidence may become the evidence that causes discoveries in the personalization of health care.  Although this difference in ODL discovery, development and utilization does seem to be emerging, I question whether the derivation of ODLs will have varying results in engaging the patient.

2. ODLs will be best managed if co-managed

While sensors exist and are rapidly evolving, tracking and managing an ODL is likely to be a conscious task with today's technology. Although the greatest researchers are working hard to make ODL capture as seamless as possible in their projects, the fact is that managing them will be a patient's job to some or a large extent.  To make this worthwhile for the patient, the patient needs to see value from tracking and/or managing that ODL.  If a clinician does not understand how to properly synthesize an ODL as part of managing a patient's care, neither the patient nor the clinician will see much value in ODLs.  An incredibly simple yet poignant discovery was made this week in the importance of co-managing ODLs through a co-designed care plan...one that satisfies the questions, interests and willingness of BOTH the patient and the clinician in identifying, documenting, planning and managing ODLs as part of a patient's care plan.  Is this novel...co-management?  We've heard this term before in other forms...shared decision-making, activated patient care, etc., but do we really understand the power of this concept to engage patients?  ODLs may be a new opportunity for the medical industry to engage patients in aspects of health they understand and may be able to control.

3. ODLs may create new relationships in patient care

We patients love our doctors and place a premium on more time with our doctors.  We bring our doctors information we collect from the web and trust our doctors to use it.  We believe that our doctors know best.  However, many of us are increasingly seeing others on the care team...nurse practitioners, mid-level clinicians and health coaches...a potentially growing trend in our evolving policy landscape.  Our doctors are expanding our touch points to handle the complexities of our diseases.  ODLs may add an entirely new dimension to the complexities of our diseases in ways that are foreign to the episodic visit model.  ODLs may drive streaming data to a care team member or be managed through a set of automated algorithms in an electronic system.  Regardless, the reality is that doctors may delegate ODL management to others on the care team.  This reality may both increase patient engagement with someone in patient care, but may also be a hard pill to swallow for those of us who really like our doctor.

Though still in their infancy of development, ODLs may be a critical component to truly engaging the patient because they are important factors the patient understands and may have interest in managing...thus improving health and health care for all who care.  I am excited for the future of ODLs and thoughtful about their approach...let's hope other patients are, too.

ODLs: Not as Simple as We Thought

By Anind K. Dey, Carnegie Mellon University, Embedded Assessment Principal Investigator.

Two weeks ago, I attended the second Project HealthDesign workshop at the Vanderbilt Center for Better Health, with the Project HealthDesign team and the other grantees. It was another valuable workshop. Clinicians from each of the grantee projects attended, and there was a wonderful presentation by Dr. Kevin Johnson from Vanderbilt, a first round grantee.I not only learned more about the projects of my fellow grantees, but I also learned a lot more about our Embedded Assessment project. Up until this point, I thought I understood the observations of daily living (ODLs) that our project wanted to focus on, but I realized that I had something to learn. My team's focus is on using sensors embedded into everyday objects that can be used to monitor how well an elder performs everyday activities, and therefore be used to perform in situ assessment of cognitive decline. In consultation with our occupational therapists on the team, Linda Kent from Presbyterian SeniorCare and Diane Collins from the University of Pittsburgh, my graduate student, Matthew Lee, and I came up with a list of ODLs: medicine taking, phone use and meal preparation. But, what we realized during conversations with the other attendees are that these ODLs are really meta-ODLs or observable ODLs (not a great name, I know!) or proxies. The ODLs that we really care about are the things that these ODLs consist of: change in fine and gross motor control, ability to initiate and sequence activities, ability to situate oneself, etc. I'll call these elemental ODLs, for lack of a better name. While we had been considering our meta-ODLs somewhat independently, I think we have an opportunity to look at them more holistically, and treat all sequencing actions (in meal preparation and medicine taking, for example) as the same set of activities.
 
This is particularly exciting because it could allow us to answer the "why" question that has alluded us up until now. When we show potential users of our technology sample graphs produced by the system, they may reveal an increase in how much time they spend on a particular task over a month we will inevitably get asked "Why is that?". We can't answer that question without ground truth data and observations of all activity inside their residences. Perhaps it's due to a cognitive decline, but perhaps it's because they always call a friend in the middle of the activity. One is clearly a cause for action, while the other is not. But, if we can now collect and visualize data about the meta-ODLS, we can see how patients perform on elemental ODLs within these. For example, we could show that a patient has difficulty with sequencing tasks, both for the medicine taking and the meal preparation tasks. These kind of correlated activities would go a long way at answering the "why" question and helping our patients and clinicians trust the data our system can produce.

Obviously we're really excited about this new understanding. It's going to be a lot more work to explore these ideas, but I think it'll be really fruitful in the end!