Health 2.0 ‘Unmentionables’ Panel

Is Your Bank Balance Making You Sick?

The ‘Unmentionables’ panel at Health 2.0 was a fascinating one with some great new perspectives. What are the unmentionables in healthcare and technology? Alex Drane, president of Eliza, believes that the real unmentionables in health are the real life factors that prevent us from being able to live the healthy life we know we should live. These factors include debt, caregiver stress, and other big events that knock people off track. Eliza created an “ostrich index” to estimate how much these factors are being ignored around having an impact on a person’s health. As a result they found that there was a significant negative impact on people’s health. They also discovered that positive (“buffers”) and negative (“magnifiers”) coping abilities also have a profound impact.

Another finding was that shifting the balance of positive to negative in terms of coping also has profound impacts on health. Ms. Drane said they have begun to define financial stress, relationship stress, and caregiving, as chronic diseases. Using these three domains they created a vulnerability index. In building the index they found that 34% of the variance in self-reported health scores is accounted for by the difference in these three criteria. There was also a doubling of the rates of non-adherence in patients who are vulnerable — both people who forgot to take their meds, and those who chose to not take their meds.

Lacy Hart, is a program manager at the Mayo Clinic for diabetes care. She spoke about the challenges of caring for patients with numerous life stressors. She defined a “data gap” between measurements such as blood glucose values and the the real issues and stressors that are preventing a patient from being able to take care of themselves. They created an online questionnaire that captures information such as whether or not the patient is worrying about money, whether he is feeling overwhelmed, and other areas. Their site also includes localized resources to help patients with problems like financial stress. The tools and information they developed can be found at www.semnbeacon.org. It is open-source and can be freely used.

Wendy Lynch, Co-director of the Center for Consumer Choice in Health Care, spoke about how social support has long been recognized as a potent factor in each person’s health. Social support profoundly affects both the mortality of a population and an individual, as well as the specific diseases a person might get. She claims that research shows that, currently, 90% of free time is consumed by watching TV. So how can this gap be addressed? She gave one example. In their initiative to increase social support among knee and hip replacement patients, users are rated not just on how much they have used their application, but also based on other criteria such as how much advice users give each other, and how much they support other members. Once this system was implemented, users began to connect much more.

In terms of caregiving, Terry Clark from UnitedHealthcare Medicare and Retirement, spoke on the ways in which UnitedHealthcare has changed their approach. He cited the number that 65.7 million people have served as unpaid family caregivers to an adult or child. (source: Caregiving in the U.S. National Alliance for Caregiving in collaboration with AARP and MetLife, 2009). However, using their own data from “Caregivers in Decline” 2006, he said that most caregivers suffer diminished health while caregiving. Their organization has defined five health stages. Normal, steady-state, managing health events, eventual decline. They list caregiving as a separate state that can co-occur with any of these stages. In attempting to address this issue, they identified tools to help caregivers by three approaches – simplify, personalize, and care. 77 million boomers are aging and 28% of people at any point in time are caregiving.

Faheem Ahmed, from SAP, spoke about the “accidental caregiver.” He talked about how caregiving for many people occurs as a dramatic moment of change. Perhaps your child is diagnosed with autism, or a spouse has a car accident, or a parent is diagnosed with dementia. To address this issue, they created Care Circles. Care Circles has curated channels of resources for caregivers, allowing them to compose care plans on the fly. People have to be invited to participate in any one person’s care circle. When a person logs in, you can see your care circles, which can be for multiple people. In the care circle, other people on the team can see and read the things that have been added to a care plan, such as information about a new drug. There are also journal options, including trackers for reporting behaviors like tantrums. They are starting Care Circles first for families with children with special needs, but will be rolled out into other communities soon.

Ms. Drane then talked about how caregiving is one of the easiest, most palatable of these ‘unmentionable’ topics for our society to start addressing these factors that impact people’s ability to live the healthy life they need. Sex is much less likely to be an easy topic.

Sex – the big unmentionable

Deb Levine, from ISIS, spoke about Circle of 6, and app to help prevent acquaintance rape, sexual assault and sexual violence. The circle of 6 mobile app won the DHHS challenge of “Apps against abuse.” The app asks you to select six people from your contact list. It then asks you to designate these contacts for different tasks. For young women in early stages of abusive relationships often don’t know who to turn to, or how to reach out. They are often being separated from their peers and isolated. The app gives users ways to reach out to their friends about the topic. Another example is for a young woman on a blind date that is getting scary. If she just taps the app, one of her friends is contacted to call and pretend they have an arranged meeting now. There are also emergency contact options. Over 23,000 copies of the app have already been downloaded.

Jessica Ladd of Sexual Health Innovations spoke about her website, So They Can Know. The website allows users to find ways to share with a sexual partner a new sexual disease diagnosis. It walks users through scenarios, possible ways to inform a partner, and if none of that seems do-able, or even sounds dangerous, it even includes a way to send an anonymous email message to any and all partners. The site also provides information about follow-up care, symptoms to watch out for, and what other infections a user might have. Her company is a non-profit and the site was built entirely with volunteers for a cost of less than $5,000.

Anna Gyarmati of KamaszPanasz shared their site in Hungary, which answers questions about sexual health. Users can read general information, or ask questions. All of their articles are overseen by a physician to “make sure we are presenting medically accurate information.” The site also has a sexual dictionary to allow users to look up words and phrases, including slang. There are ways for users to post their stories, participate in forums, or even write sexual blogs.

English: Poem in the gardens outside St Mary's...

English: Poem in the gardens outside St Mary’s Church, Gowran, Co. Kilkenny. William Henry Davies’s poem ‘Leisure’ has been inscribed on a slab. It starts “What is this life if, full of care / We have no time to stand and stare?” (No. 928 in the Oxford Book of English Verse) The church is in the background. (Photo credit: Wikipedia)

Ms. Drane then shifted topics to a third unmentionable, user choices around end-of-life care. She spoke about how she felt the “death panel” fiasco set the movement of honoring patients rights back significantly. She feels that the tide may be turning, however. Jeff Zucker, of My Directives (a mobile and digital advanced directive care plan) said that entering a person’s advance directives wishes usually takes, on average, six minutes. Users are asked to click on a checklist of options of “what’s important to me,” as well as the more usual questions around resuscitation wishes. People are allowed to change their selections at any time. The site also asks users to list their likes and joys, as well as their dislikes and fears, so that their caregivers, family and friends will know in case they can no longer speak for themselves. The site uses audio, video, and checklists. Once the information is entered, a legal document is generated. The site also gives users tips for how to share this information with family and friends. They are blue-button and HIPPA-compliant.

Alan Pitt of EmergeMD talked about his own personal story. He is a physician, like his father, and he shared that he thinks that the symbolic “black bag” of the physician can no longer possibly hold all that we need to do in healthcare. His mother became quadriplegic after an accident, and he is now in the role of caregiver from a distance, watching his mother receive fragmented care. He spoke about hospice as a different approach than people usually expect. He believes it is a service to help people “live, aware of their mortality.” He created a hospice care application that allows care cycles to be shared between providers who are all caring for a patient. His site allows users to have video-calls with friends, patients, and other providers.

Alex Drane then spoke about Care With Grace, which was created in honor of her sister who died of malignant glioblastoma. She talked honestly about the difficulty in having the conversation about quality of life with someone you care about, even when the outlook is grim and the care team is excellent. She encouraged everyone in the audience to go online and fill out an Advanced Directive. She feels that when the people you love are acting as caregivers, those same people are often not in a good place to make these decisions for us. She ended with her belief about healthcare, that we should “Cure sometimes. Relieve often. Comfort always.” Ambroise Pare’, 1510-1590.

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