Introducing a new patient community paradigm
When we think about a patient community today, we are generally referring to a disease-specific group whose members seek peer communications about living with their condition, and other patients’ experiences with physicians, care facilities, and treatment options.
Patient communities come in two flavors: moderated and unmoderated. Pharma companies have experimented in the past with hosting moderated patient communities, both for the insights that might be gained and to develop a marketing channel to influence treatment choice. However, the time and cost of moderating disease-specific patient communities, as well as various regulatory and liability issues, have made moderated communities untenable. Some highly invested actors do run sites or blogs they call “communities,” (think high-income plastic surgery practices looking to attract business) but they are careful to avoid any type of medical advice or guidance.
The result is that unmoderated communities are the norm. And that’s a serious problem for patients looking for accurate, unbiased, medically-sound information and guidance. Members frequently post both legitimate medical research news as well as unproven internet “cures.” And because of unacceptable liability risks, physicians rarely participate in a meaningful way, if at all.
It’s time to rethink patient communities so that they truly serve their members
Imagine this hypothetical disease-specific patient “community”:
Patients have control of their medical information via a decentralized health record such as Trustee®
An interested patient (let’s call her the manager for lack of a better term) decides to form a community and creates an acceptable policy in consultation with Trustee®
The manager invites others to join. Using Trustee® enables members to take full advantage of the community
Each patient delegates access to their information to the community via Trustee®. Key to this type of a community is that any physician or licensed professional can participate based on their credentials, breaking the current model that discourages physician participation
Trustee® is not a social platform. Patients have total control over what they share and what they want to see. The manager may choose to add a third-party social component based on participant requests
Even based on such a skeletal description, the benefits are clear:
Communities can easily form spontaneously , and without (corporate) interference, with more diversity and accessible to licensed clinicians
Patients are not bothered or burdened with constant decisions, such as what to share with whom, and they benefit from the experience of other patients
The participation of physicians and other licensed practitioners means the information is authoritative and trustworthy. Opinions may differ, but the reasoning will be thoughtful, based on medical experience rather than unfounded internet posts
Costs are extremely low for the manager (coding updates and maintenance) and members (single-digit monthly cost for Trustee®)
Governance is decentralized – there is no corporate sponsor attempting to monetize the community. Trust is based on open-source code and optional, not-for-profit oversight (ensuring transparency)
Because the patient is granting access to their health records, there are no regulatory barriers (eg, HIPAA) to participation by patients or clinicians
It’s more accurately a patient co-op, not a “patient community” in the traditional sense
Patients and clinicians are cooperating in that they are sharing information for the benefit of all. Can this type of co-op evolve into something more? That’s up to the participants. Some co-ops may decide to create an option for participants to fund their Trustee® accounts by selling their data to legitimate research organizations. (Note that only the individual can determine what to share or sell.) Co-op participants may decide to partner with researchers and give their data away freely, for the public good, cutting out the healthcare waste generated by data brokers.
And patient co-ops need not be just disease-specific. A co-op might form around a specific medical device or drug, and the participants may choose (as individuals) to share data with a manufacturer to improve a device or service.
The options are endless once patients are in control of their own health records.
HIE of One is developing the Trustee® decentralized health record to support this critical need. With Trustee®, patients can connect with their doctors or hospital directly, with no intermediary. Patients can decide who can access their records, and when, and can remove access as they see fit. They can get second opinions, knowing that their records are accurate and complete. Caregivers can be secure in the knowledge that they are prepared for a medical emergency. Patients can choose to participate in various co-ops to learn more about their condition and its treatment from both peers and licensed clinicians, without regulatory barriers. And they can do it all on their smartphones.