A week from Sunday, a panel of some of the leading thinkers on the topic of patient-industry relationships in health care will sit down in Austin, Texas for the “Friending Pharma” panel at the SXSW Interactive conference. It’s a vital topic: communication between health care companies and active, online patients is growing, but those relationships aren’t always straightforward: there may be perceived power imbalances, privacy concerns and legitimate questions about motivations on both sides.
The goal of the session is to reach common ground on how patients and companies can build mutually beneficial relationships. But it’s not a dialogue that should be happening only at SXSW, or only among the panelists.
So this page will serve as a repository for best practices, both leading up to the SXSW panel and beyond. Please leave your thoughts in the comments section, and we’ll update the page regularly to reflect some of the online- and in-person discussions that will be taking place, along with the names and URLs of those who contribute. What follows is just a starting point. We look forward to your feedback.
Industry Rights and Responsibilities When Dealing with Patients
- Transparency: Companies — and their representatives — should disclose on whose behalf they work, and what their goals are.
- Education: A company should not approach a patient without making a good-faith effort read to understand their positions
- Engagement: A company should refrain from asking for action from a patient without first building a relationship with the individual
- Commitment: Companies that wish to interact with individual members of an online community should first make an effort to participate, in a non-commercial way, in that forum.
Patient Rights and Responsibilities When Dealing with Industry
- Transparency: Patients should disclose industry relationships.
- Privacy: Patients have the right to choose how and when their information is shared or used.
- Honesty: When companies cross the line, patients should be able to say so, directly.
Please provide your perspective below. We look forward to seeing you in Austin!