TechCF.org moves to enhance patient outcomes with mobile device applications
By Jeanne Barnett
CFTechnology, a new non-profit, is putting mobile technology in the hands of patients with cystic fibrosis (CF). Led by social health network pioneer Jeanne Barnett, and supported by I.T. Director Ennio Bozzetti and fifteen CF patients and caregivers, the organization is working to build a representative group of CF patients who will ultimately serve to improve health care and patient outcomes via the use of mobile device applications. Specifically, CFTechnology will create a patient contingent armed with mobile devices so they can identify current and novel mobile applications that enhance compliance with CF treatment protocols. The organization believes structured feedback will support research designed to identify and direct optimal use and development of mobile device software applications for the CF population. In the end CFTechnology believes CF patients will realize both improved and ever increasing cost effective disease management. Currently, the CFTechnology team is generating ideas, accepting feedback, and providing technical support via the website TechCF.org, with the aim of providing mobile devices to CF patients nationwide.
30,000 people in the U.S. have CF and this patient community is ideally suited for mobile health care. People with CF are routinely isolated in hospitals and discouraged from physical contact with each other because of rare pathogens in their respiratory tracts. They are vulnerable to contagion when sharing breathing spaces or medical equipment. Yet it has been demonstrated that this particular patient population benefits extraordinarily from social networking and information sharing because of its complicated health care needs, comorbidities, frequent hospitalizations, and isolation. Additionally, the learning curve is steep for the caregivers and patients transitioning into adulthood.
CFTechnology embraces the idea of research and development by stakeholders. This a model for other health and chronic illness communities, though the comorbidities of CF actually overlap many other illnesses (multi-drug-resistant infections, gastro-intestinal disease, diabetes, transplantation of lungs, liver and kidneys, sleep disorders, pain management). The 15 patients and caregivers who are part of CFTechnology represent that cross section of disease entities and the diverse needs of CF patients. Among other things, they will be looking at mobile testing applications for lung function, blood glucose, blood pressure and oxygen level, and the management of medication, nutrition, and exercise. CFTechnology plans to supply devices to the larger CF population based on financial or other needs, and CF patients and families already owning such devices will be able to visit TechCF.org, access vetted apps, read reviews, set up their devices, and contribute their own ideas and experiences.
For more insight into the plans of CFTechnology and the power of the CF social health network founded by Jeanne Barnett, visit www.TechCF.org and www.cysticfibrosis.com.
Jeanne Barnett is a social media pioneer who founded www.cysticfibrosis.com in 1996 and www.TechCF.org in 2011. www.TechCF.org
