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Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down

“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
Dr. Danny Sands: Participatory Medicine Can Cure Many Ills

Dr. Danny Sands: Participatory Medicine Can Cure Many Ills

Embracing shared decision making in medicine will improve patient outcomes, reduce costs, increase health equity, and even help alleviate clinician burnout, Danny Sands, MD, co-founder of the Society for Participatory Medicine, said in a recent podcast interview. Erin...
The Keys to Good Relationships With Your Care Teams

The Keys to Good Relationships With Your Care Teams

Being born with cystic fibrosis, a progressive, genetic lung disease, I have had countless health encounters throughout my life. Through these experiences I have learned the power that lies in self advocating for my health in the clinic setting with my doctors and...
Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented  early...
Building a Framework for Authentic Patient Centricity

Building a Framework for Authentic Patient Centricity

As a leader in patient advocacy, I am often asked to speak on the topic of patient centricity and patient advocacy from the biotech/pharma perspective. What do we mean by patient centricity or when we say that patients are at the center of what we do or patients are...
Healthcare as a Meeting of Two Experts

Healthcare as a Meeting of Two Experts

When I was training to become a clinical psychologist, my supervisors gave me several pieces of great advice. One told me that the psychologist or therapist is the expert on mental health treatment and research but the patient or client is the expert on their own...
Social Work and The SPM Manifesto: It Just Makes Sense

Social Work and The SPM Manifesto: It Just Makes Sense

Navigating youth and their families through what is often a complex mental health system is a job that is frustrating but also an honor.  As a licensed social worker, my compass through the journey is guided by a group of core values. The National Association of...
Everyone-Included Research

Everyone-Included Research

Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ Proem Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for...
Whither Cochrane, for e-patients and everyone else?

Whither Cochrane, for e-patients and everyone else?

This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to...

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