Stanley Feld M.D.,FACP,MACE
Healthcare is a team sport. The patients are the most important members of the team. They are the players. Physicians are the coaches. They should be adjusting their recommendations after receiving maximum data from the patients. Patients must become the “professors of their disease”. In order to have a successful team, physicians need several assistant coaches. The physician extenders must not be physician substitutes. Physician extender are nurse educators, dieticians, psychologists, social workers and exercise therapists. Patients must be at the center of the healthcare team and relate to the entire team in order to have maximum knowledge about their disease. It requires a great deal of responsibility on the part of the patient.
I chaired the American Association of Clinical Endocrinologist Diabetes Guidelines in 2002 in which this team approach is outlined. The AACE diabetes guidelines also contains a patient/physician contract. It spells out the responsibilities of the patient and physician. The team unit cannot be successful if the assistant coaches act independent of physicians.
The internet can provide some infrastructure to aid the assistant coaches. So far, internet based information has not been an extension of physicians’ care (Healthcare 1.0). It has been a failure. The internet assets developed (some of which have been good) have proven to be ineffective in repairing the healthcare system.
Jennifer McCabe Gorman understands the problem. She is working diligently to promote the concept of connecting internet based patient centered information with physicians care (Healthcare 4.0). I believe she understands the concept of patient centered healthcare with healthcare as a team sport and physicians as the leaders of the team. I believe she has the passion and ability to translate this vision into reality.
Until now content on the internet has provided generic information about chronic diseases. Most of the information lacks context and nuance. Most of the internet content does not explain the pathophysiology of the disease process. Internet content out of context tends not to be helpful. Some of the content is inaccurate.
Jen McCabe Gorman describes Web 2.0 as a combination of content and social networking. Disease based social networking is growing rapidly and rightly so. We are all social beings starved for information. We need and seek disease based social interaction. Social networks give patients the opportunity to cluster by disease and share their experiences with a disease process. This can be helpful. However, its limits must be understood. Individual patient uniqueness and disease variation must be taken into account. It would be wonderful if the social network were an extension of the individual patient’s physician’s care. Physicians will gradually understand its value as a teaching tool to help patients become “professors of their diseases”. Presently disease based social networks act as physician substitutes. This use decreases both physicians’ and social networks’ effectiveness.
Patients live with their disease 24/7. If patients understand the dynamics of their chronic disease, they and their physician can be more effective in their decision making. Patients would have a better chance of controlling their disease and avoiding the costly complication of the disease.
I believe that repair of the healthcare system can be partially achieved with effective disease specific social networks as an extension of physicians’ care. Social networks are not focused on that goal yet(Healthcare 2.0). The goal is to get to Healthcare 4.0
Healthcare 3.0 is what Google Health and Microsoft’s Health Vault are trying to do with an internet based Personal Health Record (PHR). I predict they will fail. It is not connected to physicians care. My wife and I carry our PHR on a key ring flash drive. The PHR could easily be carried in an IPhone.
Patients must express outrage and force their physicians to utilize the medical records patients have gathered. Patients input into their own care, control of their own data, participation in the treatment decision making and being responsible for their care is the only way to reduce costs and avoid chronic disease complications.
Healthcare 4.0 will arrive. With the expansion of social networking we are developing more sophisticated patients who will become sophisticated consumers of healthcare. Patients will demand functional EMRs from their physicians. Only then will disease specific social networks become an extension of the physicians care and effectively decrease the complications of chronic disease.
The two primary stakeholders in the healthcare system are the patients and the physicians. All other stakeholders are secondary stakeholders. Additionally, it is essential that all the stakeholders align their collective vested interests in order to repair the healthcare system. With the development of internet based assets including a fully functioning EMR the alignment of vested interests will occur because patients will be empowered to demand it.