Pharma and the Empowered, Educated Patient

Jeanne Barnett argues that pharma needs a ‘chronic care university’ to create compliance, build knowledge, and reduce costs

In a recent article, I put forth a patient manifesto: Make the waiting room a digital classroom.

I have run the social health community cysticfibrosis.com since 1996.  

Once a patient is diagnosed, CF becomes a central focus for all involved.

CF and many other chronic illnesses require the patient or caregiver to acquire an enormous body of knowledge, almost like earning an advanced degree in a new field. 

I like to think of CF as a graduate-level disease.  

A Chronic Care University curriculum is needed. Some patients are self-directed and seek information quickly; others prefer to wait for professional guidance.

For the CF patient, there are co-morbidities of breathtaking concern, requiring hundreds of medications and with many different delivery systems and cleaning protocols.

A partial list of subjects in the CF patients’ curriculum includes: genetic testing and mutation classes, mal-absorption and digestive enzymes, intestinal blockages, g-tube feeding, pancreatitis, cystic fibrosis-related diabetes, fecal fat tests, chest physical therapy and mucus clearance, bacterial respiratory infections, asthma and allergies, sinusitis, sinus surgery, pulmonary function testing, CT scans, bronchoscopies, sputum cultures, lung and liver transplantation, pregnancy and infertility, medications and adverse effects, delivery systems of medication, aerosol, port and picc intravenous lines, clinical trials, research in progress, fundraising, social and home care, school protocol, exercise, nutrition, safe cleaning of equipment and more.

The communal waiting room does not provide protection for the risk of bacterial cross contamination for anyone, especially for the immune challenged chronically ill.

Moreover, using digital technology, patients can customize their time in their own waiting room—home, school, place of work or even in the car—and learn at their own pace. 

They can give feedback, launch into their appointment with relevant questions, and initiate the tests their doctor wants (questionnaires, blood pressure, glucose level, weight, oxygen level, etc).

Using video and animated programs, as well as games, patients can see how medications work, learn about delivery systems and how to clean equipment. 

They can develop and participate in customized exercise programs.  

Also the Important Safety Information (ISI) of a medication can be conveyed to caregivers and age-appropriate patients.

Continuing education for patients

By taking tests and gaining credits from the Chronic Care University, patients can be awarded certification badges encouraging them to engage as leaders in their online communities.  

Compliant patients can qualify for monetary compensation from insurance carriers (including government) through a reduced co-pay/deductible.

The PHR (Personal Health Record) is an important digital resource for keeping research up-to-date.

In this light, patients need to be encouraged and motivated to regularly update their chronic disease PHR.

Digital tools can facilitate the input process. Patient participation could be incentivized through some type of compensation.

Digital apps will allow patients to peruse clinical trial listings.   

Pharmas are moving towards the digital clinical trial “in a FedEx/UPS box” with a protocol allowing for information exchange among the participants.

The digitally enhanced self-directed process can teach and test patients about their disease, medications, and bodies overall, creating a new adherence perspective.

By the way, The Physicians’ Desk Reference (PDR) estimates in the US the cost of not taking medications is as much as $300 billion per year. 

The Chronic Care University is a new frontier for creating compliance in healthcare, building knowledge in patients, creating loyalty to health care clinicians, and decreasing the cost of it all by keeping us well.

The partnership of creative engineers, pharmas, insurance carriers, healthcare professionals, government, and patients affords limitless opportunities to build the curriculum content for chronic disease graduate degrees.

In the words of Anne Frank, “How wonderful it is that nobody need wait a single moment before starting to improve the world.”

Patient advocate Jeanne Barnett founded the e-patient community at cysticfibrosis.com in 1996. For more information, see Medrise.com. For more from Jeanne Barnett, see ‘Future pharma: The home as healthcare center‘ and ‘Patient power: From technology to treatments‘.

For everything patient-related, join the sector’s other key players at Patient Adherence, Communication and Engagement (PACE) USAon October 24-25 in Philadelphia. Download the full PACE agenda and speaker line-up here.  Want to know more? Contact laura@eyeforpharma.com.

To read our Patients’ Week stories from 2010, see Patients’ Week 2010.

For more on how pharma can make the most of new technologies, check out eyeforpharma’s Future Pharma special report.

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