Patients of BC (from Project to NPO)
Patients of BC is starting life as a project sponsored by an existing Rare Disorder Society. Once underway, it intents to become its own Non-Profit Organization (NPO) as the first in a series of Patients of Canada NPOs partners each either regionally or vertically organized to provide its patient and family caregiver members the services of a registrar, localization services, advocacy, integrated health care and navigation services.
Why would a socially responsible for profit company (Collaborative Solutions) recommend formation and sustainable support for a Non-Profit-Organization (Patients of BC)?
Collaborative Solutions is a technology company with shareholders are collaborating with CS4 by providing licensed software to the WhoKnozMe – Multi-Function Platform (MFP) for a future royalty consideration. They, along with other shareholders, invested in the development of the Medical Information Framework (MIF) and LifeLine Patient and Administrators Portals. CS4 seeks a “reasonable” return on investment derived from modest Software as a Service Fees earned over a large population of users is the objective which include annuities for service organizations based on the users and participants they engage with.
Because CS4 is charging a subscription fee we are not a Facebook, Google, LinkedIn, Twitter and others where the user and their data is the product for corporate profit. Collaborative Solutions has gone to great lengths to isolate itself from the patient/user personally-private and private information.
There is value in patient information but any monetary value derived from it use in research or innovation should accrue to the patient or their designated non-profit-organization who are representing their common interest. Collaborative Solutions has a number of strategies to support and provide sustainability for an NPO.
The structure and organization of Patient of Canada is contemplated to start in the jurisdiction the British Columbia as a Medical Service Plan (MSP) insurer Health Insurance BC which is consistent with MSP plans administered provincially and territorially and then other vertically structured MSP plans for federally organized groups i.e. armed forces, veterans, diplomats, indigenous or other citizen population groups with national patient interests.
The Patient of BC/Canada concept was first proposed as a cooperation between Collaborative Solutions, the Canadian Pituitary Patient Network and Vancouver Acromegaly Support Group with an opportunity to engage with at least one national organization starting with Canadian Organization of Rare Disorders (CORD).
Using Government of British Columbia as the example, BC provides oversight on key provincial demographic and marketplace classifications including: Seniors, Children and Youth, Information & Privacy, Patient Safety & Quality Council, Athletics, Innovation …. but currently nothing directly related to Patients. Should there be a “Provincial” Advocate, Commissioner or Council or simply a separate patient funded and managed association.
A similar reference concept for Patient of Canada (BC etc.) followed CS4’s study of professional colleges or associations (Medical, Legal, Engineering and others) who are organized both nationally and provincially.
The Royal College of Physicians and Surgeons is national and in BC is the College of Physician & Surgeons of BC both provide accreditation based services. This is similar for the other twenty-two BC medical colleges providing accreditation for other practitioners and providers. In the case of Doctors of BC (NPO : British Columbia Medical Association), the members are physicians and surgeons. One of the many goals is a voice of BC doctors and includes committee work on patient centered care ideology and health promotion.
Patient of BC, in a similar manner to Doctors of BC, intends to represent both past and present patients or groups of patients (societies or NPOs) in the access to and use of medical and health and wellness information and health system navigation services plus encouraging health innovation and patient led research initiatives.
Where could or should “Patients of BC” fit in relation to BC MoH – Health Services?
The taxonomy for BC patient centered care and engagement is found as follows: Government of BC > Ministry of Health (MoH) > Health Services > Primary & Community Care Policy Division > Patient Care Access > Patients Engagement & Community Programs > both Patients as Partners and Community Health Centers.
Under Patients as Partners funds a collection of patient-centered organizations including: Family Caregivers of BC, PainBC, UBC-iCON, UBC-CCMI, UVic Self-Management Programs, Delaney& Associates and Doctor of BC.
Other services include HealthLink BC (811) provides 7/24 access to navigators, registered nurses, dietitians, exercise professionals, and pharmacists. Imaging how effective this services would be with access to a unified patient managed health record the treatment plans and coaching tools.
The BC Patient Safety and Quality Council and its Patient Voices Network (PVN) is where one would could have been a logical place include Patients of BC but the PVN is used primarily to provide patient feedback in context of patient care delivery through Health Authorities and their clinical facilities (hospitals, clinics and newly announced Urgent Care Centres).
The BC Support Unit (advanced patient-oriented research)