How technology can improve adherence, create loyalty, and decrease costs

The non-profit CFTechnology is devising digital solutions to help people with cystic fibrosis



Since 1996, I have run the website CysticFibrosis.com.

When physically together, people with CF run the risk of bacterial cross-contamination.

Our site is an antidote to this danger because CF patients use our digital technology to safely share their experienceswith medication, airway clearance devices, and alimentation, while building a message of encouragement and adherence.

Reading the forums and personal blogs, having conversations with members, visiting hospitals, and attending birthday parties and funerals, it became obvious something was amiss.

The emphasis in the CF community is often onthe worthy goal of ‘finding a cure’, but curiously, little buzz or fundraising is done for modernizing standards of care.

At CysticFibrosis.com, mostly populated by patients and family, I could see from the outset that better, more organized care would prolong lives.

Patients lack hygiene protocol information to prevent bacterial contamination, have few to no resources for collecting and storing data about their own conditions, and have little ability to compare themselves with others. 

As patients get sicker, the schedule of their daily regimen becomes complicated and congested.

Self-care becomes less effective and, traditionally,they enter a hospital.

Over the years, some patients, many of whom are lamentably no longer with us, seemed to have accepted poor clinical health standards as inescapable. 

The care rendered was not the best.

Some even felt compelled to defend the conditions of their hospitals, possibly because it is painful and awkward to fight for change and to push against the very same hospital employees offering them aid and coddling them. 

Other members, despairing of the conditions in which they are hospitalized and the degree to which logic and CF protocols are ignored, challenge their healthcare providers by taking an active role in each decision made about their care.

Many patients have to travel hundreds of miles for routine assessment, testing, and ‘tune ups’to environments with mutagenic bacterial strains. Why travel?

In recent years, the technology for remote physiological and medical testing has been advancing to remarkable efficiency, yet most people with CF have no access to it.

CF is very time-consuming for healthcare professionals and patients alike.

Fortunately, technology is now creating opportunities for improving care regimens, digitizing paperwork, remotely logging vital signs, and reducing or eliminating waiting room times.

Our non-profit organization aims to be an arm of research and development,using apps and the web, not just for our community, but for all the stakeholders who are trying to analyze patients and what they need. 

A number of active members of our site have demonstrated discerning perspectives in dealing with cystic fibrosis. 

We designate them as health opinion leaders (HOLs). 

They have lived with CF and its daily treatment protocols for years.

Every day, these leaders remotely and safely serve the community with their experience, communication and leadership skills. 

Taking advantage of the timing and latest digital technologies, I established a 501(c)(3), non-profit organization: CFTechnology.

The purpose is to fund our mission to supply the CF community with digital devices (iPads, tablets, smartphones, apps,etc.) for remote doctoring, checkups, exercise, schooling, diet, activities for daily living, and other requisite tools for improving the life expectancy and quality of life of people with CF.

Our members will use these instruments to discuss, create, enable, and drive innovations in health-related technology.

Remote technology enables a safe frontier for improving compliance in healthcare, building knowledge in patients, creating loyalty to healthcare clinicians, and decreasing the cost of it all by keeping us well.

Our intention is to hone in on the needful areas within our community and respond with digital solutions.

Simply said, tech keeps us in touch!

Patient advocate Jeanne Barnett, a regular eyeforpharma contributor, founded the e-patient community at cysticfibrosis.com in 1996. For more information on CFTechnology, contact Jeanne Barnett: jeanne@techcf.org.

For more articles by Jeanne, see Future pharma: The home as healthcare center, Patients’ Week 2011: Pharma and the empowered, educated patient, What Google+ means for pharma, Patients' Week 2011: Make the waiting room a digital classroom, Patient power: From technology to treatments, and How Quick Response codes can help pharma engage with patients.

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