Hallmarks of Patient Leadership
The foundation of Patient Centered-Core Impact Sets (PC-CIS) creation is a plan that is driven or led by patients or co-led by patients in partnership with other stakeholders. Patient involvement can and should contribute to each aspect of PC-CIS creation, including highly technical aspects such as data analysis. The following provide guidance for best facilitating patient leadership:
Many efforts similar to PC-CIS creation have employed robust patient leadership. Examples are provided below for your reference:
A key consideration in patient leadership and engagement is clearly defining patient and patient representatives’ roles and the perspectives needed. The National Health Council (NHC) has developed guidance for identifying and describing the myriad functions and roles of patient and patient-group representatives, Who is the Patient? tool.
Input from various stakeholders is needed in PC-CIS creation. Assuming patient leadership, the first step should be to think through who the various stakeholders are that will also need to be engaged and how to engage them. Clinicians, clinical specialists, and others who provide services related to the condition should be involved, as well as payers for health care services, including government and private insurance companies when possible. Private employers, who in the US and elsewhere are the source of health insurance for many employed persons and their families, are another stakeholder for consideration. These efforts can also include researchers from academia, government/regulatory entities, and life science industries (biopharmaceutical, device, and diagnostic).
Lastly, thought should be given to inclusion of experts from nonprofit organizations that might be able to contribute to the effort. These would include professional societies, research foundations, and charitable organizations that provide services or research funding related to the disease.
In alignment with ensuring all relevant stakeholders are included, there will likely be the need to form collaborations and consortia to accomplish PC-CIS development. These partnerships can take many forms. But, again, the patient community should lead or have a leadership role when not the lead organization.
It is expected that collaborations and consortia will be needed to bring all stakeholders together for successful PC-CIS creation. Examples of such models include but are not limited to:
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