Social networks are important in that they (1) alert patients to information they may not receive from their professional care team (doctors, nurses, CDEs are often too overworked to keep up on all the latest research; OTOH, we have a growing cadre of patients who are willing to, and capable of, pawing through the technical information and the aimed-at-doctors newswire, and passing along both the basic information and the biases of the researchers); (2) through anecdotal data, provide different approaches to try when a patient’s current therapy is not sufficiently effective; (3) provide a place for emotional release in a group of people with similar health issues and understandings of those issues; (4) provide information on ways to achieve effective care when the cost of said care would bankrupt the patient.
All of these help patients become aware and active in self-care, helping improve the effectiveness of care and minimizing the potential for complications. These are goals that minimize the lifetime costs both to the patients and to their medical insurance carriers.
The most obvious place where patients, insurance, and care intersect – and conflict – is at the point of cost. Diabetes – even when managed to the greatest degree that modern medicine and medical technology will allow – is costly. The cost of monitoring equipment (CGMs) and supplies (sensors, glucometer strips), medications (insulin, oral medications), diagnostics (medical examinations), and hospitalizations – is higher than all but the most affluent 10% of the US population could afford out-of-pocket. We depend on our insurance policies to mitigate the costs, both by cost negotiation and by subsidy from the healthier patients in the insured group. Unfortunately, the rise in diabetes and health complications in the general population makes this less and less an actuarial possibility. For this reason, many insurance companies flat-out refuse insurance coverage to people with diabetes.
As patients, we realize that active management in the short term prevents complications – and thereby lowers long-term costs of care (and insurance subsidies). Studies from single-payer/government-managed programs confirm this position. The biggest issue facing both patients and health insurers in terms of preventative care and tight diabetes management is the job-based insurance model, by which the insurer does not visibly reap the long-term financial benefits of well-managed care (the latency between lack of care and the development of complications may mean that the patient has moved to a different insurer, a different group managed by the same insurer or reinsurer, or to publicly-insured care (Medicaid, Medicare)). This suggests that in the absence of a defined collusion and sharing of profits and risks between the various insurers, or national migration away from job-centered medical insurance, there is little incentive for change by the insurance companies.
The word “collusion” reminds us that patient records are not as confidential as the public perception of HIPAA would have us hope, nor are they as portable as would be ideal to show the potential improvement of risk to a potential new insurer. On the other hand, we as patients fear that an insurer sponsoring, or otherwise finding methods to obtain the membership lists of, a social community, might use that list to deny us insurance or hike up our premiums (both individual insurance, or those of the entire employment-based group), or might use it to check whether we are following our medical team’s instructions to the letter (even if incorrect/outdated/inappropriate), or how we view our medical team’s instructions, or whether our medical team is following the insurer’s guidelines (regardless of how appropriate those guidelines are for the patient), and negatively sanction both us and our medical team.
In short, insurers providing patients with links to social communities and encouraging them to join is a good thing; insurers sponsoring or being active in such communities may have more drawbacks than advantages.
