Factors in Patient Empowerment: A Survey of an Online Patient Research Network

[Who Me?]

Factors in Patient Empowerment: A Survey of an Online Patient Research Network

• Emil Chiauzzi,
• Pronabesh DasMahapatra,
• Elisenda Cochin,
• Mikele Bunce,
• Raya Khoury,
• Purav Dave

First online: 07 May 2016
DOI: 10.1007/s40271-016-0171-2

Abstract

Background

Providers and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.
Objective

The purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients. This study also sought to identify key empowerment factors and their association with patient characteristics.
Methods

Participants were recruited through PatientsLikeMe, an online research platform where patients share their personal and medical history data. Patients completed an online survey that assessed self-reported health behavior (e.g. knowledge-seeking, experiences with healthcare providers, and peer interactions) and healthcare access. An exploratory factor analysis identified key empowerment domains. Domain level sum scores and sum of all domains (total score) were compared across patient characteristics and diseases.
Results

Overall, 3988 participants were included in the study, with the majority actively involved in their healthcare, but many cited difficulties with matching their treatment goals with those of their physician (34 %) and spending sufficient time with the physician (36 %). Factor analysis identified two domains—Positive Patient–Provider Interaction, and Knowledge and Personal Control—that explained >60 % of the overall variance in the observed variables. Mean total empowerment scores for patients with a primary complaint of Parkinson’s disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). Patients who were older, male, more educated, and insured also reported significantly greater levels of empowerment.
Conclusions

The two domains of empowerment identified in this study are consistent with previous studies, but the differences in empowerment levels across diseases suggest a need for further studies on disease-related attributes of empowerment. Future research should examine the pathways for empowerment, as well as the relationship between empowerment domains and clinical outcomes.

http://link.springer.com/article/10.1007/s40271-016-0171-2

 

[Cort]

I'm not surprised that Parkinson's and MS did better than FM and ME/CFS. I'm surprised the scores were as close s they were actually

Mean total empowerment scores for patients with a primary complaint of Parkinson’s disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). P

I how this "Positive Patient–Provider Interaction" did with regards to ME/CFS and FM? That would be fascinating to find out.

 

[Cort]

ME/CFS had the lowest positive patient provider interaction and the second lowest knowledge and personal control. It was right below fibromyalgia!

Looking at the percent of people who took the test it was incredibly low for all diseases. Just a small fraction of the community took part - it's such a shame...only 40 out of a 1,000 people with FM and 5 out of 110 ME/CFS patients - and most didn't complete it..