Archive for the ‘Culture of Health’ tag

Exploring a Culture of Health: Detecting Signals of Wellbeing

By July 2nd, 2014 at 2:41 pm | Comment

How can we leverage technology to monitor signals of wellbeing? (Image Shutterstock/ Oko Laa)

How can we leverage technology to monitor signals of wellbeing? (Image: Shutterstock/Oko Laa)

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Imagine if everyday technology could transform how we manage our health and wellbeing? What if your phone could alert your doctor to a change in your behavior? Or what if grandma’s stove could tell you she is already up and about in the morning? It sounds complicated but as it turns out, it might simply be a matter of tapping into the data generated from everyday devices. Two independent groups in California are doing just this.

Using Mobile Technology to Help Youths with Mental Illness

At UC Davis behavioral scientists with the Early Diagnosis and Preventive Treatment (EDAPT) Clinic are embarking on a yearlong project to study whether mobile technology can improve treatment for young people who are in the early stages of psychotic illness. The EDAPT group has teamed up with Ginger.io a health data start-up to assess “users’ social, physical and mental health status”[1]. Through an app, users can actively input their daily symptoms, medication adherence, mood, and how they are coping, while information on their movements and daily social contacts, such as the number of incoming telephone calls and text messages, is gathered in the background. All of this data provides a patient and his or her clinical team with a finer resolution of that patient’s health profile.

A smartphone app that tracks signals of well being in youths with early stage psychosis (UCDavis EDAPT Clinic/Ginger.io)

A smartphone app that tracks signals of well being in youths with early stage psychosis (UCDavis EDAPT Clinic/Ginger.io)

“With this detailed level of data, our health care providers get a more complete picture of how their patients are doing – across multiple domains – in a way that may not be possible in a brief session,” explains Dr. Tara Niendam, an assistant professor in the Department of Psychiatry and Behavioral Sciences at UC Davis and Director of Operations for the EDAPT Clinic.

Having a record of this information enables the patient and the clinician to build links between experiences and symptoms. “Instead of relying on the patients’ memory, the clinician is able to look at the data and say, ‘Hey, I noticed that you had an upsetting conflict Tuesday and your mood was very low Wednesday. What happened?’ It empowers the patients who can learn to recognize his or her potential triggers,” says Dr. Niendam. The technology also gives clinicians information about their patients on a more immediate basis. “We quickly identify patients who have stopped their meds and can reach out to them about why, allowing us to identify issues with side effects or patient concerns more quickly,” explains Dr. Niendam.

And it works for patients too—by using mobile phone technology, adolescents are able to monitor their health and partner with their provider in a way that fits their lifestyle.

 

Tapping Smart Meters to Monitor Wellbeing

Just two hours south of UC Davis in the technology hub of Silicon Valley, the people at the Palo Alto Medical Foundation (PAMF) Innovation Center are examining ways to address the social health and wellbeing for the aging community. Their recent effort, LinkAges Connect, is exploring the potential for signal detection to help seniors continue to live independently, safely. One of the challenges to the aging population is their loss of independence, their increased loneliness, and the burden thals. The answer they came up with – tap into the smart meters infrastructure.

Smart meters are electronic devices used by utility companies to remotely monitor household consumption of basic utilities such as electricity, gas or water. These meters provide a constant data stream and over time can provide a picture of an individual’s typical home activity. “It is a non-invasive, non-intrusive way of detecting if grandma is okay,” says Tang. “When grandma wakes up and makes breakfast, there will be a spike in energy use. That information will be relayed through LinkAges Connect’s system to notify the family that grandma is up and active.” The system can even help detect if something is wrong. Increased energy use at night for example, could indicate that grandma is suffering from insomnia. Noticing a change, her caretaker would know to check in.

Using household utility usage data from smart meters to monitor well being of seniors (PAMF/LinkAges Connect)

Using household utility usage data from smart meters to monitor well being of seniors (PAMF/LinkAges Connect)

With the support of Robert Wood Johnson Foundation (RWJF), LinkAges Connect with be testing its system in the homes of seniors for more research and development. The UC Davis/Ginger.io study is also a recipient of RWJF funding.

“These two projects are testing whether we can leverage technology to help us, and the people who care for us and about us, track and understand changes in our behavior that are indicative of a change in health status,” explained Paul Tarini, Senior Program Officer at RWJF. “Making it easier to be mindful of our health will help us advance a Culture of Health.”

You don’t have to be enrolled in a specific study to contribute to health and technology research. Ginger.io app users can contribute to science by passively submitting their own information or enrolling in current research collaborations if eligible. There is also information for researchers interested in utilizing this technology in their work.

Many citizen science projects are taking advantage of sensors to collect and track data. AirCasting is a project that allows citizens to monitor air quality by combining a smartphone app and a DIY Air Monitor. Loss of the Night uses your cell phone camera as a sensor to monitor light pollution. Noise Tube turns your cell phone into an environmental sensor to collect data about noise pollution. These and many other similar projects can be found using the project finder at SciStarter, an online citizen science hotspot.

What are some ways you track your health? Does it affect your day to day choices? Do you have ideas for using existing technology or infrastructure to monitor or measure health? Leave a comment below.

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Interested in a more active participation opportunity in a health related citizen science project? The UC San Francisco Health eHeart study is globally recruiting participants for their ‘electronic clinical research study’. This study examines lifestyle patterns and heart health to improve what doctors know about preventing and treating heart disease. Participants will be asked to complete eVisits (online surveys) and in some cases wear special heart sensors. If you have an internet connection, you can participate.

If learning about gene-environment interactions is in your DNA, Infinome might be of interest. Infinome is an open science experiment studying how genomics and behavior affect health and longevity. Participants submit genomic information, such as results from 23andMe, as well as health and behavioral monitoring data. The project is seeking participants to help them through beta testing.

References

[1] http://ginger.io/the-science/

Image Credits

UCDavis/ginger.io and Palo Alto Medical Foundation

 

Exploring a Culture of Health: Building Resilience to Undo the Effects of Childhood Trauma

By June 17th, 2014 at 12:03 pm | Comment

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Working with children to undo the effects of childhood trauma

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Early life experiences lay the foundation for mental development as well as general health and well-being. Having a loving family environment, exposure to healthy habits such as nutritious eating or exercise and socioeconomic stability are good indicators for healthy psychological and physiological development. Not surprising news. The reality, however, is that not all children grow up in an environment that checks all of these boxes. What happens to kids who face difficulties like poverty or neglect early in life?

Unfortunately it is not good. Neurobiological and social research show that adverse childhood experiences (ACEs) increase the risk of developing mental and physical health issues. ACEs include being abused as a child or exposed to a parent’s   violence or drug abuse, or loss of a parent through divorce, mental illness or incarceration. These “stressful environments impact children’s emotional development, mental health, cognition and their ability to learn,” states Dr. Darcy Lowell of Child First, a Connecticut-based home-visit program that works with at risk children between the prenatal period and the age of five.

Read the rest of this entry »

Exploring a Culture of Health: Connecting Patients and Researchers to Enhance Discovery

By June 11th, 2014 at 3:48 pm | Comment

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.

Nicholas Volker aged six, from Minona Wisconsin had suffered from a highly inflamed intestine since he could walk 1. The strange disease that his doctors could not diagnose required no less than 100 surgeries. Dr. Alan Meyer, Nic’s doctor and a pediatrician at Children’s Hospital of Wisconsin eventually decided to try a radical form of diagnosis—DNA sequencing. What Dr Meyer and his team found was a rare, ‘undiagnosable’ disease—one that could only be treated by a bone marrow transplant from umbilical cord blood.

Though he was eventually treated, Nic, his parents and his doctors had gone through a long and painful ordeal in searching for the cause of his disease. Nic could have experienced a far easier path to his eventual treatment if we had a better understanding of our genome and how it relates to diseases. While many research efforts are focused on deciphering our genome, accelerating basic research and its translation to the clinic requires an integrated effort on a much larger scale. Importantly this effort should involve the participation and more meaningful collaboration of citizens and patients in research.

“People who live with a disease every day are untapped experts. Allowing their data and experience to inform the medical discovery process will increase the likelihood that the resulting discoveries and clinical encounters give them the opportunity to live healthier lives, and will help us build a national Culture of Health,” says Paul Tarini, a Senior Program Officer at the Robert Wood Johnson Foundation (RWJF) which supports transformative ideas through its Culture of Health initiative.

With support from RWJF, several efforts are underway to explore how data, insights, and knowledge contributed by patients can further medical discovery and improve health care.

Partnering on research

BRIDGE, operated by Sage Bionetworks, is an online platform where patients can track their health data and work together with researchers and funders as virtual teams on research. “What this means,” says Thea Norman, director of Strategic Development at BRIDGE, “is that for someone who is interested in becoming more involved in medical research as a patient—someone who has insight into a disease they are suffering from, and who is motivated to understand what they are suffering from—BRIDGE offers significantly more opportunity than the traditional method of research.”

Open Humans: An online platform that connects participants and researchers

Open Humans: An online platform that connects participants and researchers

Whether collected on an app, through survey or via a personal online journal, BRIDGE offers citizens a place to store their data in whatever form they record personally. This allows researchers and other patients to potentially find correlations between some of the data collected and a journal entry that provides critical information.

The added benefit for people who contribute data? “Early insights and perhaps a shorter, faster path to new therapies,” says Tarini.

A number of research projects will be piloted on BRIDGE in the coming year—all of them will engage patients as partners in the process.

Sharing data

Open Humans is an online platform that connects research participants willing to publicly share data about themselves with researchers interested in using and adding to that public data. In the pilot phase, Open Humans will work with the Harvard Personal Genome ProjectAmerican Gut and Flu Near You GoViral—all studies that return data to participants and enable them to share it. Eventually, scientists will be able to work with participants to create additional data.

“When research studies agree to share data with participants, something incredible is possible: people have the ability to aggregate and share that data, to be combined with other data and re-used in powerful new ways,” says Jason Bobe, program director of Open Humans. “More sophisticated research questions and new insights become possible when data can be integrated from multiple research studies: does genetic background impact flu resistance? Does the community of microbes in the gut influence flu susceptibility?”

Improving treatments and clinical practice

PatientsLikeMe’s Open Research Exchange (ORE) is another platform that gives both researchers and patients a space to work together. The goal of the Open Research Exchange is to identify health outcomes that are meaningful to patients and develop measures that assess treatments or clinical practices against these outcomes.

Open Research Exchange: Patients and researchers working together to develop meaningful health outcomes

Open Research Exchange: Patients and researchers working together to develop meaningful health outcomes

Paul Wicks, the Vice President of Innovation at PatientsLikeMe and leader of the ORE initiative explains, “Many health outcomes used today to assess the efficacy of new treatments or clinical practices were developed from the perspective of the health system—what can we measure objectively, such as a blood test, or what costs the most, such as an emergency room visit. But what matters to patients is the impact of living with disease – the symptoms and side effects, the fact that they can’t work, or that they feel stigmatized.”

A classic example of this is Alzheimer’s disease. Many trials use a test called the ‘mini mental state examination,’ which asks patients to remember simple words, or say who the president is, or cite today’s date. As Wicks notes, “Caregivers don’t bring Grandpa to the doctor because he can’t remember who the president is. They bring him because he can’t remember who Grandma is.”

 Are you participating in the Harvard Personal Genome Project or American Gut and thinking about joining the Open Humans network? Interested in sharing your data and collaborating on research through BRIDGE? Want to help make health care more patient-centered through the Open Research Exchange? Start a conversation in the comments below about what would incentivize you to use these platforms and participate in collaborative research to build a culture of health.

 

If you want to do more, you can always contribute to other health related citizen science projects below that are on SciStarter, an online hotspot for citizen science!

Human Memone Project

DIYGenomics

 

References

1. A story of faith and one tough boy” Dec 25, 2010 Milwaukee Journal Sentinel http://www.jsonline.com/news/opinion/112397804.html

Image credits

Logos for Open Humans and the projects that contribute to it were obtained from openhumans.org. The Open Research Exchangelogo was obtained from openresearchexchange.org

 

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Exploring a Culture of Health: Disrupting the Doctor’s Office with Flip the Clinic

By June 4th, 2014 at 9:27 am | Comments (2)

Flip the Clinic, a Robert Wood Johnson Foundation Program

Flip the Clinic, a Robert Wood Johnson Foundation Program

This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come. 

Posts in this series will also appear on the Discover Magazine Citizen Science Salon Blog and the PLoS CitizenSci blog

Healthcare is an imperfect system. Your visit to the physician occurs only once in a while and when it does happen, these visits are often short, impersonal, and a drain on both your time and monetary resources (1). On average, a primary care doctor has more than 2,300 patients and each patient visit lasts for about 15 minutes (1). If you take a step back, you will realize that’s an extremely short time for both you and your physician to discover, process and understand an awful lot of information about your health. Not surprisingly, most of us have experienced an unsatisfactory interaction at the clinic.

But, this interaction is at the heart of healthcare and ought to mean a whole lot more, reckons Thomas Goetz who helped start the  Flip the Clinic, a Robert Wood Johnson Foundation (RWJF) project that seeks to rethink the physicians’ visit.

Goetz, co-founder of the health technology company Iodine and at the time an Entrepreneur-in-Residence at Robert Wood Johnson Foundation, came up with the  idea for Flip the Clinic (FTC), while listening to  a talk at RWJF by Sal Khan of Khan Academy. In early 2013, Khan spoke at RWJF about how he “flipped the classroom” by making lectures accessible online so students could learn at their own pace and do their homework in class instead, making full use of the teacher’s presence. Khan suggested that for the doctor’s office might be ripe for such that kind of flipping too.  Goetz agreed and almost immediately started the FTC project.

“Pragmatically, the doctor’s visit is a powerful part of modern medicine. The problem is that we are not optimizing this resource; we have not reconsidered and re-evaluated how we might exploit the visit to its full advantage,” says Goetz in a blog post describing the impetus for Flip the Clinic.

Flip the Clinic functions as a  hub for addressing challenges, exchanging ideas, and filtering those healthcare practices that work and those that do not. Through its website, everyone from patients to medical experts and healthcare providers can submit ideas or pose ‘flips’ relating to any aspect of the medical encounter. The community is encouraged to engage in a discussion around these potential flips.

An example of a flip on the FTC website (left) and posting and participating in Community Flips (right)

An example of a flip on the FTC website (left) and posting and participating in Community Flips (right)

Flips such as “How do I show patients that I’m invested in their health?”, “How can I encourage patients to learn more about their conditions?” and “How do you redesign the clinic?” have generated interesting conversations with comments from patients, physicians, nurses and researchers.

Like me, you will probably find yourself spending time on the site flipping through many thought-provoking questions and the exchange of ideas in the comments. And, perhaps, wondering how the emerging field of citizen science could help reinvent how patients and providers interact. One way citizen scientists could help ‘flip’ the clinic is by contributing to and using crowd sourced data from Flu Near You (2), a citizen science project. With this data, physicians and patients could alert themselves of an emerging infectious outbreak and prepare accordingly. Have other ideas? Share them.

At the heart of the Flip the Clinic initiative is youWhether you are a patient, a physician, a nurse, a hospital administrator or anybody involved in healthcare, your voice matters. Your ideas and your experiences are what will help ‘flip’ the clinic. Ask yourself: as a patient, what has frustrated you about your medical encounters? As a medical provider, what ideas do you have or challenges do you experience? Share your idea for a “flip” or participate in the flips proposed by the Flip the Clinic team or community. Would your organization like to contribute to the effort? Become an organization ally.

Flip the Clinic depends on your involvement. So go ahead and be part of the solution. Flip the Clinic!

Image Credits: fliptheclinic.org

References

  1. http://fliptheclinic.org/faq/ ‘why should a doctor’s visit change?’
  1. SciStarter is a citizen science hotspot and a partner of Discover Magazine. Flu Near You is one of the many citizen science projects on the SciStarter project database

 

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