TABLE III.

Tool 2: assessment of patient-group internal aspects: focus

Item	Yes	No	NA	Notes
Vision or areas of focus: Are the patient group’s vision, mission, goals, and areas of focus clearly stated and reasonable?
Do these statements seem to reflect sound judgment regarding the disease space and state of the science?
Is commitment to these statements demonstrated in the patient group’s activities and performance?
Operations: Are the patient group’s operational programs well structured, performing well, and demonstrating measurable impact?
If the patient group awards grants, are awards made via a credible application and peer-review process, and do the awards reflect the vision, mission, goals, and areas of focus?
Does the patient group have and make good use of solid scientific or medical professional staff and advisors?
Does the patient group have an effective fundraising and budgeting process adequate to its vision, mission, goals, and areas of focus?
Does the patient group receive good ratings from charity monitors such as Imagine Canada?
Does the patient group’s collaborative model include partnering options for sponsors outside of grant-based options?
Budget and fundraising: Do the patient group’s budget and fundraising programs seem adequate to its needs or show signs of being able to become so?
Are the sources of the patient group’s fundraising transparently disclosed (donors, industry, government grants, etc.)?
Has the patient group been able to marshal the resources required to establish important assets for development (for example, patient registry, clinical network)?
Does the patient group devote a healthy percentage of its budget to its operational program compared with its overhead (for example, administrative and fundraising costs)?
Does the patient group’s budget over the last 5 years demonstrate a fundraising capacity that is steady or growing and diverse in sources?
Communications: Does the patient group have the communications systems needed to facilitate development across the full continuum?
Does the patient group have sufficient online presence, including social media?
Does the patient group issue a variety of publications to various audiences?
Does the patient group use these communications effectively to educate, motivate, and engage its patient community and its medical, scientific, industry, and government partners?
Does the patient group use these communications effectively across all phases of clinical development in which it is engaged?