PHE - Resources

"I started Crohnology because after living for Crohn's for 14 years, I realized that the data that I was gathering outside the doctor's office was just as important as, if not more than, what I was learning inside. Since my diagnosis at age 12, I have had a dozen major flare ups of the disease. I found that, for me, diets and supplements, stress reduction and mental relaxation, and exercise help. I heard many people on the internet claim that they had found the magic bullet, but I thought it was irresponsible to be so confident. Just because these things worked for me, I wasn't about to claim that they work for everybody. Instead, I decided to build a patient-powered research network that would allow patients everywhere to be contributing their own treatment experimentation in a way that could be aggregated for us to learn what actually works for whom. - Sean Ahrens"

Camille Nebeker: I'm writing a paper on mHealth and research ethics across regulated and unregulated sectors. Came across an article that you may appreciate - it's basically saying that people need to be trained when conducting scientific research. It was aimed at clinicians - not citizen scientists:

Spend Money on AI or Just Give Doctors More Time? Eric J. Topol, MD; Abraham Verghese, MD; Danielle Ofri, MD, PhD DISCLOSURES September 04, 2019

Let's remember to feel happy!

Center for Medicinal Cannabis Research

"Kabir Recommends: The Positivity Self Test is a brief, 20-item survey that asks you to report on your experiences of several emotions over the past 24 hours. Each item on the test includes a trio of words that are related, but not quite the same, for example, "hopeful, optimistic, or encouraged" and "sad, downhearted, or unhappy." With this strategy, each item captures a set of emotions that share a key resemblance and this short test becomes that much more accurate. Keep in mind that the Positivity Self Test merely provides a snapshot of your emotions. Everybody's emotions change by the day, hour, and minute. Some scientists would say that they change by the millisecond. Given your ever-shifting emotional landscape, any single measure of your positivity ratio can only capture so much. One way to overcome such measurement hurdles is to measure repeatedly. Even if you complete the Positivity Self Test as honestly as possible, you should view your score for any given day with some skepticism. Was this particular day representative? Probably not. Days vary. So the more days you can average together to create your estimate, the more trustworthy that estimate becomes. You can get a clear picture of your typical positivity ratio by completing the Positivity Self Test every evening for two weeks. Take the Positivity Self Test In the scientific literature, the Positivity Self Test is also know as the modified Differential Emotions Scale, or mDES, created by Dr. Fredrickson based on an earlier scale developed by pioneering emotion scientist, Carroll Izard. The scholarly references are: Fredrickson, B. L. (in press). Positive emotions broaden and build. In E. Ashby Plant & P. G. Devine (Eds.) Advances in Experimental Social Psychology. Elsevier. Fredrickson, B. L., Tugade, M. M., Waugh, C. E., & Larkin, G. (2003). What good are positive emotions in crises? A prospective study of resilience and emotions following the terrorist attacks on the United States on September 11

Recommended by Kabir: "In both Love 2.0 and her earlier book, Positivity, Dr. Barbara Fredrickson describes ground breaking research on our supreme emotion, love, as well as the hidden value of all positive emotions. She encourages readers to experiment with their own lives, finding ways to create more micro-moments of love and positivity that work for them. One way to begin is to keep track of your emotions on a regular basis. Dr. Fredrickson developed the Positivity Self Test featured in her research, her books, and on this website to help you assess your current positivity ratio and track changes in your ratio over time. Just like tracking calories or cash flows can heighten your awareness and in time help you meet your fitness or financial goals, tracking your positivity ratio can help you raise your ratio and build your best future. Results may vary. Best outcomes emerge from sincere and heartfelt efforts to raise your ratio coupled with honest reports of your emotion experiences. Read more about the Positivity Self Test or take the survey here."

Recommended by Sharon Wampler "How we see the world shapes who we choose to be - and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective. As someone with a chronic illness, I shouldn't have to advocate for myself when I'm at my most ill. Is it too much to expect doctors to believe the words that I have to force out, amidst spikes of pain, after I've dragged myself to the emergency room? Yet so often I've found that doctors only look at my patient history and actively ignore most of what I've said."

Recommended by vicky newman

Recommended by Sharon Anderson Morri

Interview with Grace Chang, CEO of startup Kintsugi, an AI powered voice activated journaling app I've used intermittently for several months. ~ Dennis

Recommended by Kabir I've been enjoying this book on the subject of Positivity in the research that has been done on the construct. As it turns out there is a mathematical tipping point for when positivity in our lives moves from an inert force to one that can dramatically impact and improve the qualities of our experience. Roughly speaking this is 3 positive thoughts/emotional experiences to 1 negative thought or emotional experience. When we reach this ratio (which is above average) on a consistent basis, it has meaningful impact on our health and well-being. So I wanted to invite you to this exercise with me: Throughout your day, each time you notice a negative thought or emotion, first feel, recognize, and accept the experience, and then Complement it by recalling 3 distinct things that you are grateful for, love, or enjoy - in essence bring about 3 positive thoughts/emotional experiences. Let's see what this does for our health and well-being! :-)

Recommended by Kabir

"San Diego philanthropist Denny Sanford made a major gift to UC San Diego for research into the biology of compassion, the university said on July 22, adding that such research could help train future generations of physicians."