Hallmarks of Patient Leadership
The foundation for Patient-Centered Core Impact Set (PC-CIS) creation is a plan that is 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:
Considerations for Patient Leadership
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 many functions and roles of patient and patient-group representatives [Who is the Patient?].
An important step is outlining the time commitment and level of engagement expected of patient partners. There must be a sufficient number of patients involved in the effort and workload, and responsibility can be shared as required. For example, patients who want to be involved but cannot offer a significant amount of time, may need an option for involvement that is more flexible and allows them to contribute asynchronously as their schedules and commitments permit.
For those patients and patient groups who are invited by other stakeholders to partner in the creation of a PC-CIS, (versus leading the effort themselves) it is imperative all collaborators come to the table with the same high level of appreciation for the critical role of patients. Patients should carefully evaluate the authenticity of the invitation. Are they being brought in at the last minute? Are they being invited to co-lead the initiative or is the role more limited? Can they trust that their priorities and insights will be honored? These are some of the questions they need to ask.
Input from various stakeholders is needed in PC-CIS development. Assuming patient leadership, the first step is to think through who the various stakeholders are that 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 the 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. Depending on the group aiming to develop the PC-CIS, there may be partners outside of the healthcare sector who could be important such as educators (pediatric conditions) or occupational safety experts (musculoskeletal or neurological diseases).
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 development. Examples of such models include but are not limited to:
Arthritis Use Case