by Eric Bersh | Mar 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
by Eric Bersh | Jan 27, 2022
After a happy couple has been dating and in a stable relationship for a while, they often decide to take a traditional, next, more permanent step to the institution of marriage. They make an announcement to kick it all off: “We’re engaged!” When we hear about an...
by Helene Clayton-Jeter, OD | Jan 14, 2022
Join the Society for Participatory Medicine (SPM) Mid-Atlantic and HealthScape LifeSciences LLC (HSLS) “Conscious Conversations” workshop on Zoom, February 1! Learn how to apply the principles of nonviolent communications (NVC) from expert and life coach Rob Kanzer...
by Eric Bersh | Jan 5, 2022
When Regina Bertlich was diagnosed with metastatic pancreatic cancer, her doctor referred her to palliative care and never told her that clinical trials could be an option. Regina’s daughter, Ines Bertlich, MD, decided to do her own research. Ines and her father and...
by Brenda Merriweather | Dec 7, 2021
In 2004, as a staff nurse at Baptist Medical Center South in Montgomery, Alabama, I cared for a group of pediatric and adult African-American Sickle Cell patients who would come to my medical-oncology unit for treatment. They would stay a few days, get fluids, and get...
by Lisa Gualtieri, PhD, ScM | Nov 22, 2021
The answer is probably not your medicine cabinet. The answer may be your nightstand, kitchen counter, or a variety of other locations in your home. The question is, where do you store your prescription medications? I became interested in medication adherence through...
by Eric Bersh | Nov 15, 2021
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by Helga Yang | Nov 8, 2021
In the fall of 2020, in the depths of the pandemic, I attended the Philadelphia Inquirer Telling Your Health Story Conference from the safety of my home. I had volunteered to do the Story Slam at the end of the conference and planned on presenting a piece about caring...
by Vasilliki E. Kalodimou, MD | Nov 1, 2021
Working as a health care researcher can be both rewarding and challenging, as daily we need to remember our commitment to our patients’ well-being and ethics to support treatment decisions. We are all familiar with deplorable abuses of human subjects in research, such...
by Eric Bersh | Sep 27, 2021
Conversations between SPM co-founder and Chief Advocacy Officer, Danny Sands MD and Annie Brewster MD, founder of Health Story Collaborative. Here they discuss meeting patients where they are. Did you enjoy this video? Sign the Manifesto and learn more about...
by Amy Camie | Sep 21, 2021
Years before the first of my two breast cancer diagnoses, I shared live harp music in chemotherapy infusion units, spoke to support groups about the healing power of music, and developed a clinical trial exploring the effects of specific music on patients undergoing...
by Carly Flumer | Sep 13, 2021
I didn’t want to tell anyone about my diagnosis. I thought my family and a few close friends were enough. But I got brave one day four years ago and posted about it on social media. The outpouring of support was incredible. I thought, if I’m receiving this much...
by Eric Bersh | Aug 30, 2021
Conversations between SPM co-founder and Chief Advocacy Officer, Danny Sands MD and Annie Brewster MD, founder of Health Story Collaborative. Here they discuss meeting patients where they are. Did you enjoy this video?...
by Jessica Zitter, MD MPH | Aug 10, 2021
I received an uncharacteristically anxious text from my friend Aileen: “I am having an emergency with my Mom. Please call ASAP.” When I last talked to Aileen, her mother’s dementia had been worsening slowly. A little more confusion, a stovetop left burning after...
by Richard G Kahn | Jul 29, 2021
Usually, I write from the perspective of a patient advocate diagnosed with Wolfram-like syndrome, a rare disorder of the endoplasmic reticulum that typically manifests first with optic atrophy, then insulin-dependent diabetes. For the purposes of this blog post,...
by Eric Bersh | Jul 22, 2021
Conversations between SPM co-founder and Chief Advocacy Officer, Danny Sands MD and Annie Brewster MD, founder of the Health Story Collaborative. Here they discuss what it means being a doctor and having to say “I don’t know” to a patient. Did you enjoy this video?...
by Christophe Jauquet | Jul 3, 2021
For the past 20 years, I’ve been involved in designing diverse health experiences: from diagnostic to adherence tools, from software for cytostatic preparation, to integrated mobile health solutions. During these projects, I cannot say that the patient was never...
by John Novack | May 29, 2020
Guest post by empowered patient Howard Chang. See bio at end. I’m a highly engaged patient advocate who has faced many challenges. To my unhappy surprise, the coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in...
by e-Patient Dave | May 12, 2020
This morning the New England Journal of Medicine released the latest publication about OpenNotes. The news: an innovative pre-visit form created for the “OurNotes” study has been released before the study is completed, for other providers to use to improve...
by e-Patient Dave | Mar 9, 2020
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I’ll expand this post with more links as we digest what’s been offered and will unfold in the coming week. The...
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