In healthcare, according to Tom Ferguson, a pioneer of patient Internet use, there are two complementary networks of connections: the medical, professional network and the patient network. A third network is needed--a network of health consumers working with healthcare providers.
The medical network consists of the doctors and other health professionals talking to each other. They interact routinely with and among each other. They meet with individual patients for brief and sometimes intense interaction but they repeatedly meet with and interact among themselves. Adding electronic medical records adds another layer of interaction among professionals.
Each person living with a disease or condition, the patient, has his or her own set of support networks. Expanded and reinforced by the Internet, e-patients are informed health consumers, using the Internet to gather information about a medical condition and may include patients, family, and friends who go online. e-patients and their support networks can and do provide extensive information and support to complement the diagnostic and treatment resources provided by doctors. (See Tom Ferguson et al, e-patients: how they can help us heal healthcare 2007. PDF download)
We are witness to an emerging new type of interaction, between consumers of health services who are informed and seeking to take charge of their health and the world of the professionals. For this type of relationship to work, the traditional relationship of professional and patient needs to evolve and change. Ferguson saw this new relationship as revolutionary. He saw it as the single patient talking with a single doctor, creating a new kind of 1:1 relationship. I think we need to go further. Now what is needed is a new type of bridge between the professional network and the patient networks.
This issue becomes crucial if we are to mobilize people with chronic conditions to be effective managers of their health. This will not be resolved by a national push for electronic records. Using computers for medical records will not, of itself, provide the answer to enabling patients to take charge of their health. Medical records are part of the professional network. While it is helpful in some situations for patients to have a comprehensive copy of their records, that won't help the patient who needs to work on daily routines (self-monitoring, exercise, diet, etc.). That kind of information is found in the patient support network. And patients are not trained to interpret medical records, nor permitted to prescribe medical treatment.
Doctors can be notoriously slow to adopt "best practices" and evidence-based treatments. (I think a typical lag is on the order of 15-20 years: many doctors still miss obvious cases of sleep apnea, or are unaware of the potential of rehab to improve the quality of life of people with COPD). Perhaps a network of e-patients can make an impact on their medical network, raising awareness of best practices and new treatments. See: Sleeping Beauty: Who can awaken her?
Reviewing the range of new interventions available to assist patients at a distance, there is software as well as human support available by way of hand-held devices, phone, or computer. These interventions are either strongly medically based on a traditional medical model and replicate a professional-patient relationship at a distance; or they are consumer-oriented services.
I think we need to go beyond the complementary model described so well by Tom Ferguson and his colleagues: the informed, proactive patients getting professional advice and treatment from professionals. And the same patients reaching out to their support networks. The success of this model depends heavily on the temperament and effort of the patient, and the openness and flexibility of the caregiver. It is vulnerable. It is still early days.
The problem to solve is this: we need a "third network" to provide consumer-oriented services that are solidly informed by valid medical science and supported by trained healthcare persons, yet open to new discoveries by patients and that can provide medical-patient interaction as well as the e-patients and their networks. This will implement the great revolution predicted by Ferguson, and will become of great importance for self-management of chronic conditions.