5.1 What is Stakeholder Engagement?

Slide 1
Hello, my name is Damian Alderman and today, I will be going over what is meant by the term “stakeholder engagement”, and what it means for you in your role as a Citizen Scientist.

Slide 2
[slide listing session topics: definition, value, stakeholders vs. representatives, and examples]
In today’s presentation, I will discuss what is meant when researchers say “stakeholder”, and talk about the value of stakeholder engagement and perspective, particularly from community members. We will also cover the difference between engaging stakeholders and engaging representatives from specific organizations or groups. I will end with successful examples of stakeholder engagement.

Slide 3
Now you’ve heard the term ‘stakeholder’ before, but what exactly do we mean by that? Who are the stakeholders?

Specific to the medical field, a stakeholder can be a patient, or someone who helps care for, and make the health decisions for a patient, also known as a caregiver. Patients and caregivers may have excellent input about quality of patient care in a facility because they experience it firsthand.
A stakeholder can also be a clinician like a physician, nurse, lab technician, or patient assistant who deals directly with patients and know how medical services are being experienced by the patients and caregivers.
Stakeholders may also include support staff who’re also a vital part of any health care facility, but who may not have contact with patients as often as clinicians do. These stakeholders can often include administrative staff, billing personnel, chefs, custodians and supply technicians, or research staff, to name a few possibilities. While these stakeholders may not be able to speak directly as to how well the facility provides patient care, they may have valuable input on something like whether a facility operates efficiently.
Stakeholders that may not immediately come to mind include vendors, manufacturers, and insurance payers. Medical equipment, technology and supply companies, drug and device manufacturers, and insurance companies who pay for health care all have a great interest in how health facilities use their products.
Decision makers are another important stakeholder group. This can include local, state, or federal lawmakers who create laws that a facility must abide by or facility-level leaders who shape rules and regulations about how the facility is run. At the facility level, these decision makers can also include a Board of Directors who may be in charge of all the decisions about the facility. Decision makers can also mean the department leaders.

Slide 4
Working with an individual stakeholder is a bit different than engaging with a stakeholder from a specific organization or advocacy group. Individual stakeholders act of their own accord and are able to share their own input, while simultaneously representing their community. 

Representatives from organizations or groups are there to offer feedback based on the beliefs or goals of their groups. They speak for the rest of their group and may sometimes have to base their actions on how the group would feel instead of how they, as an individual, may feel about a topic.
It is common to have large groups with both individual stakeholders and representatives from groups or organizations but typically, in medical research, it will only be individual patients or stakeholders, like you, who are giving their input.

Slide 5
Now, I just listed a lot of potential stakeholders. Why bother with all these people about questions about how efficiently a facility is running, or how patient care is being delivered?
A facility leader or Board of Directors could absolutely make the decisions and just move forward, but they would be missing out on valuable input and perspectives that they may never think about, and that input can be the catalyst that changes everything. Each of those stakeholders is focused on a specific function or interest in order for the entire facility to function well, everyone has to do their specific function. In medical research, the research priorities and topics of focus have traditionally been shaped by the priorities of scientists and health professionals, who may be out of touch with what is important to patients.
Some funding organizations have made it a requirement to include input from stakeholders. While this is especially true for medical research, it could very well be the case in other fields as well.
Including stakeholder input in medical research gives the research results into everyday practice, which improves patient health and population health outcomes.
Involving stakeholders in processes that may likely affect them is the right thing to do.

Slide 6
We know who the stakeholders are, and why they should be included, but the real struggle is how to make their involvement meaningful. This is a common concern among researchers, and as they work to balance getting the work done quickly (which can sometimes include making decisions in the hallway with other clinicians they run into or sometimes in speaking in jargon at team meetings) and getting a full complement of input on the work, which takes time to explain things, and may require protected time every so often to come together as a group to discuss updates and challenges. This can leave stakeholders feeling like their participation amounts to just that of a checked box- because some funding organizations require stakeholder input, some researchers may feel that just inviting a stakeholder to a meeting is enough. They may never speak about the project or explain in common terms so that the stakeholder can truly understand the challenges they may be able to help resolve.
Meaningful engagement gets stakeholders involved from the beginning of a project, which can include identifying research questions or problems that are relevant and important to the community. The stakeholder can give opinions about whether the research results could be applied in a real-world setting and advise on how to share those results with the community. Meaningful engagement means that the stakeholders should be involved in joint decision-making from the start of a study.

Slide 7
I’d like to share with you examples about different types of engagement.
In engagement from a community group, the focus of the engagement is based upon the group’s desires. An example of this would be if a member of an organization is focused on healthy eating habits and physical activity served on a community health center’s healthy lifestyles program advisory panel. While the member may have expertise beyond what its organization does, the primary purpose of the engagement is to ensure the organization has a say in how the healthy lifestyles program is run by the community health center.
Advocacy groups are very similar, in that their engagement aligns with a specific issue or topic. For example, say a tobacco cessation educator works for a large respiratory health organization. The educator is just part of a larger tobacco control coalition in that city to stay up to date on collaborations and policy issues that may arise in the area. The alliance notifies all its members, including the educator, about an upcoming city council hearing for a proposed law prohibiting smoking in public places. The alliance encourages its members to attend and to testify in favor of the law. While the educator may also be passionate about the topic as a private citizen, he or she would attend the city council hearing to support and speak on the issue through his or her work on the tobacco control alliance. The remarks the educator would give would be approved by the respiratory health organization that he or she works for, to ensure that anything the educator says is in line with how the organization stands on the issue.
Stakeholder engagement is different in that a stakeholder thinks about things from the average person’s point of view. There is no organizational or issue-specific loyalty, just input based on interest in either a topic or improving health care. An example of this type of engagement might be if a Citizen Scientist were asked to give input on whether patients would respond to a recruitment poster they saw hanging in a clinic. The Citizen Scientist might point out that the sign is very text-heavy and uses lots of technical jargon, which the average patient just might not understand.

Slide 8
[summary slide listing key questions: who can be a stakeholder, why they are needed, and what makes engagement meaningful]
Now to wrap up our discussion today, we talked about examples of stakeholders and the roles that they play in a larger group; we also talked about why the stakeholder perspective is so valuable, particularly in medical research. I also covered what makes stakeholder engagement meaningful and how to avoid feeling like a checked box on a list of requirements.
Sometimes, despite the best intentions of the research team, stakeholder engagement can be less than meaningful. As a Citizen Scientist, you can ask the team what you can do to play a bigger role in the study, and demonstrate that you are committed to the work by reading background material like previous research studies, notes from past team meetings, or information about the condition on which the study is focused. In order to sustain meaningful engagement, effort has to come from both the research team and the stakeholder.
Thank you very much for watching.