When the FDA approved the Ora-Quick In Home HIV test early this year, it seemed to be a huge advance for the decentralization=democratization movement in health care. Individuals who had little or no medical access or who were too anxious to get tested at one could buy a kit (around $40 at Walgreens) and check for themselves. Time Magazine named it as one of its inventions of the year, Magic Johnson cheered its value for the minority community and scores of other activists applauded its approval.
Throwing some cold water on this enthusiasm, comes this editorial in the Nov 20th edition of the Annals of Internal Medicine (pay firewall) from Paltiel and Walensky. They summarize their thoughts in this paragragh:
We are struck by the unreserved enthusiasm that the FDA's approval of OraQuick has prompted. We believe that home HIV testing may play a useful but limited part in a program of good sexual health. Expectations that it will eliminate barriers to expanded HIV detection seem unrealistic. Home HIV testing is not a substitute for routine HIV screening in health care settings, provision of which is still our best hope for identifying the 235 000 Americans who remain unaware of their HIV infection (10) and linking them to effective care.
They are wrong.
They do make some valid points on the relative cost of the test: $40/test is prohibitive, especially in the cohort of people who already don't have access to health-care. But this should be overcome with competition and price subsidies - why can't a NGO donate money so that people can buy coupons and buy these tests? And they're right that there are serious ramifications for getting a false negative result and perhaps just as serious ones for getting a positive test. Counsellors and clinicians should be made available to anyone who either does not understand what the test does, wants a confirmation of their test result or needs further treatment.
But what they're completely missing is the larger trend of decentralization of health-care. Much like voters consumed election news from multiple sources this year, people also consume health care in novel and decentralized ways. For example, this Pew Survey found that:
Fully 85% of U.S. adults own a cell phone. Of those, 53% own smartphones.
One in three cell phone owners (31%) have used their phone to look for health information. In a comparable, national survey conducted two years ago, 17% of cell phone owners had used their phones to look for health advice.
Smartphone owners lead this activity: 52% gather health information on their phones, compared with 6% of non-smartphone owners. Cell phone owners who are Latino, African American, between the ages of 18-49, or hold a college degree are also more likely to gather health information this way.
In the US, a clinical trial has shown that patients can accurately perform HIV tests in an ER by themselves. Meanwhile, in South Africa, where clinicians are scarce, this trial is trying to promote non-healthcare-provider HIV testing. All these are singular data points on the larger vector towards decentralization and patient initiated health-care.
The mistake that Paltiel and Walensky make is that they're clinging to an archaic model of medical care where when you're sick, you go to the building with red cross on it. But that's not how people access health care any more. People find information on google. Or on disease specific communities on-line. Or in facebook groups. And yes, penultimately, patients who are concerned about HIV will need professional counsellors. And ultimately, patients who test positive will need clinicians to order further tests and prescribe treatment.
But this counselling and these tests and treatments don't need to be done in a central location. In fact, the pivot that the medical community needs to do is to stop funneling patients into an edifice and start leaving the comfort of the clinic to engage with patients in their physical and virtual worlds. The idea that patients can test themselves shouldn't be a cause for alarm, but rather further validation that patients have new powers in a world of democratic information and testing. The medical community needs to accept this as a feature, not a bug, of the modern world, break out of the security of the older paradigm and starting thinking of how to improve the care of patients in this new landscape.