Microblogs: Patient Engagement

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Reflecting on our Larger Purpose and Needed Human Connections
The uncertainty of tomorrow and when we might begin to re-integrate into our old lives, where routine may have provided a sense of comfort, is only adding to our anxiety. How might we move beyond this uncertainty to chart a brighter and clearer future for ourselves?
Perhaps the answer can be found by first analyzing what has started to change for the better in our lives. 
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Exploring Crohn’s Disease and Ulcerative Colitis Treatment Options with Others Online
Inspire has communities where thousands of patients who have IBD share their experiences with treatment.
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Rethinking the waiting room experience
Phoenix-based Banner Health is taking that step with the launch of a virtual waiting room across its Banner Medical Group practices. Banner Health is using mobile chatbots to help patients remotely complete the paperwork and check-in processes for medical appointments before they step into the clinic.
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Understanding the human side of the COVID-19 crisis
Seeking to not only understand the disease, but also consumer questions, concerns, and behaviour.
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Converting to Virtual Practices
In the midst of the Covid-19 pandemic, physician practices are turning to telehealth. Across four primary care practices, this article describe their experiences in trying to become “virtual practices".
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Applying the Lessons of the Past to the Challenges of COVID-19: Open-source approaches for the repurposing of existing or failed candidate drugs--Learning from and applying the lessons across diseases

Repurposing has the objective of targeting existing drugs and failed, abandoned, or yet-to-be-pursued clinical candidates to new disease areas. The open-source model permits for the sharing of data, resources, compounds, clinical molecules, small libraries, and screening platforms to cost-effectively advance old drugs and/or candidates into clinical re-development. Clearly, at the core of drug-repurposing activities is collaboration, in many cases progressing beyond the open sharing of resources, technology, and intellectual property, to the sharing of facilities and joint program development to foster drug-repurposing human-capacity development. A variety of initiatives under way for drug repurposing, including those targeting rare and neglected diseases, are discussed in this review and provide insight into the stakeholders engaged in drug-repurposing discovery, the models of collaboration used, the intellectual property-management policies crafted, and human capacity developed. In the case of neglected tropical diseases, it is suggested that the development of human capital be a central aspect of drug-repurposing programs. Open-source models can support human-capital development through collaborative data generation, open compound access, open and collaborative screening, preclinical and possibly clinical studies. Given the urgency of drug development for neglected tropical diseases, the review suggests elements from current repurposing programs be extended to the neglected tropical diseases arena.
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Engaging Patients with Facts (our new weekly blog)
  
From my patient experience, I have come to appreciate that patient engagement exists on a spectrum from being informed to being empowered. As we all jointly attempt to socially distance ourselves to protect the vulnerable and our healthcare workers, we may be watching the numbers of newly infected, the number of deaths in our country, and across the world.

Having all of the available facts is important to me.  I have trained to be a researcher. To methodically seek out the answers to research questions, to be objective, to be analytical, and to base my conclusions on scientific evidence. Additionally, being organized, planning in advance, and enabling others is a critical personal role for me. My sense of control comes from being informed.  

It has taken effort to learn more about the biological underpinnings of COVID-19, understand who the most vulnerable are aside from the elderly, what underlying conditions may affect patient response, and how I might protect family members including those with chronic conditions. The information I have independently sought I hope, will prove to be invaluable to protect my family members.

However, many people understandably may not be able to sift through the vast amounts of data generated each day. Fear of the unknown can be crippling. To that effect, there is value in generating data that tangibly makes sense to people to comprehend where infections are spreading in their local context, the correlation between testing and the increase in new infections, categorizing infections and deaths by age, categorizing deaths by underlying conditions, how people who have chronic conditions regardless of age can protect themselves and how COVID-19 may render these people to be particularly vulnerable. For me, facts and information enable a sense of control and might enable others to feel that same sense of control (whilst respecting the requests of public officials).

While this data is emerging slowly-understandable given how rapidly the situation is changing every day, it is still worthwhile for us to analyze how we can better engage each other, leveraging the power of technology and the crowd, once this crisis passes. I anticipate that the sharing of these learning lessons will be of the utmost importance to manage future global crises. In the meantime, be safe and know that we will rise above this crisis.

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Never has the world needed the #MIT hacking mentality more than right now. Please join the MIT COVID-19 Challenge virtual event, Beat the Pandemic, from April 3 to April 5. In this 48 hour virtual event, we will tackle the most pressing technical, social and financial issues caused by the COVID-19 outbreak. All participants are welcome! https://covid19challenge.mit.edu


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How the Coronavirus Affects Social Determinants of Health
The social determinants of health are quite apparent as public health community work to address coronavirus. Critical is the need to address the disparities for the homeless or whose who are housing insecure, who have limited food security, and who live in rural regions.
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Developing a Coronavirus Treatment Isn’t Enough
India's experience combatting tuberculosis highlights that there are other significant hurdles to overcome.
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