Perspective on Patient Empowerment

May 31st, 2011 Alexandra Carmichael 

Quintiles asked me to write an essay on patient empowerment for their New Health Report, that was just released. Here’s what I wrote:

When patients are diagnosed with a chronic illness, they face a maze of decisions, questions and options that can be overwhelming. Doctors, insurance providers, pharmaceutical companies and online communities all offer important resources to help patients make these decisions and answer their questions.

But patients do not always realize their own power. Patient voices can be elevated to not only direct their own health and healthcare, but also to influence the development of new treatments, decide how value is defined in healthcare and improve the perception of patients as knowledgeable participants in the conversation about their own health.

As patients are the experts at understanding their own bodies, especially for chronic conditions (living with a chronic illness every day, trying every possible treatment, knowing what works and what doesn’t, connecting with other patients), there is a wealth of knowledge and expertise in these bodies and minds that is untapped.

Patients can influence which treatments are developed for which conditions, by speaking up loudly enough for themselves, and which ones are discontinued because of, say, too many adverse effects. By the same token, pharmaceutical companies, insurance companies and doctors will increasingly need to realize the decision-making power of patients, and take the time to understand patient needs, demonstrate the value of new treatments to them and involve patients in the healthcare conversation. Patients are willing to do more, but need to be trusted and enabled to do so.

How can patients impact drug development? There is a definite trend towards patients increasingly taking active control of their health, sharing information about treatments with each other and seeing the healthcare system as a partner in making decisions. Patient-reported comparative effectiveness studies and the power of patient activism will play increasingly significant roles in the success or failure of new therapies.

What can players in the rest of the healthcare space do to intersect with and make the most of this increasing trend? Some ideas to consider are to start by going where empowered patients gather—in online patient communities, social media and patient advocacy groups. Tap into how patients experience their conditions and how they feel about the treatments they try—what are their emotional, social, financial, lifestyle and health needs?

A focus on understanding and empowering patients will help all health stakeholders to better meet the needs of their customers, maintain a positive reputation going forward, and improve quality of care. Everybody wins when patients are empowered instead of overwhelmed.

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