# Lesson 4: Interest Holder Mapping and Engagement

*Companion-podcast transcript, Sarah and Kiffer*

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**Sarah:** Welcome back to Office Hours. I'm Sarah.

**Kiffer:** And I'm Kiffer. This week we are on Lesson Four of Health Sciences two oh seven, which is about interest holder mapping and engagement.

**Sarah:** So far the course has been about the inside of a study, its questions and its causal diagrams. Why does a lesson about the people outside the team come so early?

**Kiffer:** Because every study depends on people who are not on the research team, and the decisions about how to involve them shape everything that follows. Someone answers the survey. Someone lets you recruit in a clinic waiting room. Someone approves the release of health records. Someone reads the findings and decides whether to change a service. Teams that identify these groups early, and decide deliberately how to involve them, tend to ask better questions, recruit more successfully and produce findings that someone uses.

**Sarah:** Let's start with the vocabulary. The lesson uses the term interest holder throughout. What does it mean?

**Kiffer:** An interest holder is a person, group or organization that can affect a study, is affected by it, or holds rights, knowledge or resources that bear on it. The idea comes from management research. Edward Freeman argued in the nineteen eighties that an organization is answerable to every group that can affect, or is affected by, the achievement of its objectives. Health researchers borrowed the idea because a study, like an organization, succeeds or fails through its relationships.

**Sarah:** Many of our students will have seen a different word for this in other courses and readings.

**Kiffer:** They will. Many textbooks use an older term built on the word stake. Some Indigenous scholars and public health organizations have pointed out that the word recalls the staking of land claims during colonial settlement, and that it puts First Nations, Inuit and Métis governments in the same category as groups whose interest is of a different kind. So this series uses interest holder for the general category and rights holder for Indigenous Nations, governments and communities.

**Sarah:** What makes someone a rights holder rather than an interest holder?

**Kiffer:** Rights holders have authority over research involving their members, their lands and their data because of their rights. Indigenous Nations hold inherent rights, and Aboriginal and treaty rights are recognized and affirmed in section thirty-five of the Constitution Act of nineteen eighty-two.

**Sarah:** Let's bring in the running case. Remind us about Cedar Valley.

**Kiffer:** The Cedar Valley Social Connection Study is fictional. A small team at a British Columbia university, led by Doctor Maya Hart, is studying loneliness and social isolation among adults aged sixty-five and older, in partnership with the fictional Cedar Valley Health Authority. The region has about two hundred and ten thousand residents, about forty-six thousand of them aged sixty-five and older. There is a mid-sized city, Cedar City, several small towns such as Riverside, North Bench and Kestrel Lake, twenty-four primary care clinics, and a First Nations health partner, the Cedar Valley First Nations Health Centre. The team also has an advisory group of six older adults, who come up again and again in this lesson.

**Sarah:** The first section lists six roles that interest holders can play. Can you walk through them?

**Kiffer:** Participants provide data, like the one thousand six hundred older adults who completed the Cedar Valley survey. Partners share in decisions, such as the health authority and the advisory group. Rights holders hold authority through their rights. Gatekeepers control access to people, places or data, like clinic managers or data stewards. Knowledge users, a term from the Canadian Institutes of Health Research, are expected to act on the findings. And audiences hear about the findings.

**Sarah:** Can one group hold more than one role?

**Kiffer:** Often, and that can create tension. An advisory group member helps design the interview guide. If the team then interviewed that same person, it would be studying advice it had helped to write. So the Cedar Valley team decided that advisory members would not be interviewed, although they can still complete the regional survey like any other resident.

**Sarah:** Engagement takes time and money. What is the case for doing it at all?

**Kiffer:** The lesson gives five reasons. The first is relevance. Interest holders know which problems matter, and they notice questions researchers miss. Advisory members described how moving to a smaller town after losing a spouse had changed their social lives, and that helped the team shape its qualitative question about moves.

**Sarah:** And the second?

**Kiffer:** Feasibility. A study cannot run without the organizations that hold access. The chart review covers three hundred electronic medical record charts at six partner clinics, and each clinic has to agree. The third is quality. When the team proposed an online-only survey, advisory members pointed out that many older adults in Kestrel Lake and North Bench have limited internet access. The team added a paper version and a telephone help line.

**Sarah:** And the other two reasons?

**Kiffer:** The fourth is ethics and justice. People who give their time and information, and communities whose reputations can be affected by findings, have a claim to a voice in how the study is done. The fifth is use. Knowledge users who help shape a study are more likely to act on it. The Canadian Institutes of Health Research calls this integrated knowledge translation.

**Sarah:** You said engagement has costs. What are they?

**Kiffer:** Relationships take months to build, and engagement needs a budget for honoraria, travel and meeting space. It places a burden on interest holders, especially small community organizations and Indigenous health organizations, which are often approached by many teams at once. And a partner who funds a study may hope for favourable findings, which is why agreements should say in advance who decides what is published.

**Sarah:** And the lesson warns about tokenism.

**Kiffer:** Yes. Tokenism is engagement in name only, where people are asked for input that has no effect. It can do more damage to trust than no engagement at all. We return to it in Section Three.

**Sarah:** How should a team actually find its interest holders? I suspect most people just brainstorm.

**Kiffer:** Most do, and they stop when the list looks complete. The lesson suggests five steps. Start from the research question and the design, because the population, the exposure, the outcome and the data sources all point to interest holders. Then ask four guiding questions. Who is the study about, and who will be affected by its findings? Who decides, funds or approves? Who controls access to people, places or data? Who holds rights, or knowledge the team lacks?

**Sarah:** Then the checks.

**Kiffer:** Then a snowball check, where you ask each interest holder who else should be involved. Then an equity check, where you ask which groups are affected by the topic but rarely heard. For a study of loneliness, that check matters a great deal, because isolation itself keeps people away from the clinics, programs and online spaces where teams usually recruit. Older adults who are housebound, who have hearing loss, or who lack internet access are all at risk of being missed.

**Sarah:** Did the Cedar Valley team miss anyone?

**Kiffer:** It did. Doctor Hart and the graduate research assistant drew up a first list of nine interest holders in an afternoon. The community research associate shared it with the advisory group, and members spotted three gaps. Nothing on the list reached older adults whose first language is not English. Home care nurses were missing, although they are among the few professionals who see housebound older adults regularly. And the volunteer driver program in Kestrel Lake appeared only as a recruitment channel, even though its drivers know which older adults have stopped going out.

**Sarah:** What did the team do?

**Kiffer:** It added a seniors' cultural association, the home care program and the driver program as interest holders in their own right, and it budgeted for interpreters at two of its focus groups.

**Sarah:** Section Two moves from the list to a map. Why is a map better than a list?

**Kiffer:** A list tells you who is involved. A map shows how those interest holders relate to the study and to each other, which helps you decide where to put limited time and money. Mapping also makes your assumptions visible. If you write down that older adults have little power over your study, someone can challenge that judgement.

**Sarah:** The first tool is the power-interest grid.

**Kiffer:** Right. Colin Eden and Fran Ackermann described it in the late nineteen nineties, and John Bryson adapted it for public and nonprofit organizations. It has two dimensions. Power is the ability to affect the study, whether by approving it, funding it, blocking it, or granting or refusing access. Interest is how much the study's process or findings matter to the interest holder's members, services or decisions.

**Sarah:** And the two ratings put each group in a quadrant.

**Kiffer:** Four quadrants. Players have high power and high interest. In Cedar Valley, those are the health authority and the six partner clinics. Subjects have high interest and little power, such as older adults, family caregivers, community organizations and the advisory group. Context setters have high power and little interest in the content, such as the research ethics board, the data stewards and the funder. And the crowd has little of either, such as the other eighteen clinics and the local media.

**Sarah:** How do you decide what counts as high?

**Kiffer:** You agree on written anchors before you rate anything. The Cedar Valley team used a scale from one to five and wrote down what one, three and five meant for each dimension. A five on power means the group can approve, fund, block or withhold access that the study cannot proceed without. They agreed that ratings of four or five count as high. Then every rating gets a written reason, because a rating without a reason cannot be checked.

**Sarah:** Project management books attach labels to the quadrants. Keep satisfied, keep informed, and so on.

**Kiffer:** They do, and this is where I want students to be careful. The grid describes where interest holders stand today. It says nothing about how much influence they ought to have. Older adults sit in the subjects quadrant, and the usual label is keep informed. But the whole study is about them. A team that only keeps them informed will learn less and may repeat the pattern of research done on people rather than with them.

**Sarah:** So the Cedar Valley team deliberately raises their influence.

**Kiffer:** Yes, through an advisory group with a defined role in decisions. Many equity-focused teams do the same.

**Sarah:** The grid in the reading also has a box beneath it for the First Nations Health Centre. Why is it not placed on the grid?

**Kiffer:** Because a First Nation's authority over research involving its members and data comes from its rights and its governance. Turning that into a power score from one to five would misrepresent it. So the team shows the health centre beside the grid, as a rights holder and partner engaged through a research agreement.

**Sarah:** Are there other limits?

**Kiffer:** Three more. Power has several sources, and a single number blends them. Ratings are subjective, so they should be checked with partners. And positions change, so you date the grid and revisit it at each phase.

**Sarah:** The second tool is the influence map.

**Kiffer:** An influence map draws interest holders as nodes and uses arrows to show who influences whom. You label each arrow by type, such as approval, advice, or trust and everyday contact, and you can show strength with line thickness. There is also a participatory tool called Net-Map, developed by Eva Schiffer and a colleague, in which interest holders draw the map themselves.

**Sarah:** What did the Cedar Valley map show?

**Kiffer:** Two things stood out. First, the formal approvals all run toward the research team, from the health authority, the data stewards, the clinics and the First Nations Health Centre. Second, the strongest links to older adults run through other groups: clinics, community organizations, family caregivers and the health centre. The team's own direct link to older adults is weak.

**Sarah:** So those groups are brokers.

**Kiffer:** Exactly. A broker connects groups that are otherwise poorly connected. Community organizations sit in the subjects quadrant of the grid, but on the map they are among the team's most important routes to isolated older adults. So the map told the team to plan recruitment through trusted brokers and to ask each one how it prefers to contact people.

**Sarah:** Where do these tools end up?

**Kiffer:** In the interest holder register, which is a table with one row per interest holder. It records the contact person, the role, what the group wants, can contribute and may risk, the two ratings with reasons, the group's place on the influence map, the planned engagement and a running history. The team updates it throughout the study.

**Sarah:** Section Three is about how deeply to involve each group. You start with a classic from the nineteen sixties.

**Kiffer:** Sherry Arnstein's ladder of citizen participation, published in nineteen sixty-nine and written about urban renewal and anti-poverty programs in the United States. It has eight rungs in three bands. At the bottom is nonparticipation, which includes manipulation and therapy. In the middle is what she called tokenism, which includes informing, consultation and placation. At the top is citizen power, which includes partnership, delegated power and citizen control.

**Sarah:** Consultation counts as tokenism?

**Kiffer:** In Arnstein's terms, yes, when people are heard with no assurance that their views will change anything. Her point was that participation which leaves power where it was frustrates the people it claims to include. It remains a good test for any engagement plan.

**Sarah:** The more practical tool is the spectrum from the International Association for Public Participation.

**Kiffer:** It describes five levels of involvement in a decision: inform, consult, involve, collaborate and empower. What I find most useful is that each level makes a promise. Inform promises to keep people informed. Consult promises to listen and to report back on how input was used. Involve promises that people's concerns will shape the options. Collaborate promises to build their advice into decisions as far as possible. Empower promises to carry out what they decide.

**Sarah:** Is higher always better?

**Kiffer:** No level is right for every situation. Informing is right for a group with no decision to make, and empowering only makes sense for decisions a team can genuinely hand over. A common failure is a mismatch, where a team calls its advisory group collaborators and then presents finished decisions for comment.

**Sarah:** How does a team choose the level?

**Kiffer:** For each interest holder and each phase of the study, it asks four questions. How much can this decision still change? How much does the group want to be involved? What support would it need? What has the team already promised? The answers go into an engagement matrix, which is a table of phases against interest holders.

**Sarah:** What does the Cedar Valley matrix look like?

**Kiffer:** The advisory group collaborates on design and on interpreting findings. Clinic staff are involved in recruitment and in designing the chart abstraction form. Everyone is informed through a newsletter. And the advisory group is empowered over one concrete decision, which is how a small community fund for sharing findings is spent.

**Sarah:** There is a story in the reading about the survey and the income questions.

**Kiffer:** The advisory group made four suggestions about the draft survey: a paper version, a telephone line for questions, a larger font, and dropping the questions about income. The team adopted the first three and kept the income questions because its analysis needed them. At the next meeting, the community research associate went through every suggestion and explained each decision.

**Sarah:** And that mattered to the group.

**Kiffer:** Members said later that this was the moment they believed their advice mattered. That practice is called closing the loop, and it is exactly what the consult level promises.

**Sarah:** Let's talk about patient-oriented research. Students may have heard the phrase without knowing where it comes from.

**Kiffer:** In two thousand and eleven, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research. It defines patient-oriented research as research that engages patients as partners, focuses on priorities patients identify, and aims to improve patient outcomes. The word patient is broad. It includes people with lived experience of a health issue and their informal caregivers, including family and friends.

**Sarah:** And it has a framework for engagement.

**Kiffer:** The Patient Engagement Framework sets out four principles. Inclusiveness means bringing in a range of perspectives. Support means orientation, plain-language materials, payment and help with costs. Mutual respect means valuing every kind of expertise, including lived experience. And co-build means working together from the beginning.

**Sarah:** How did Cedar Valley apply co-build?

**Kiffer:** The advisory group was formed before the funding application was written, so members could shape the questions the funder would see. For support, the team pays an honorarium for each meeting, reimburses travel, and offers a telephone option for members in Kestrel Lake.

**Sarah:** Payment seems straightforward, but I imagine it is not always simple.

**Kiffer:** It can be complicated. Payment can affect some partners' income support or taxes, and some prefer reimbursement of expenses only. So teams should explain the options and let partners choose. Each partner role also needs terms of reference, a short document that sets out the group's purpose, decisions, time commitment and payment.

**Sarah:** Then the lesson introduces community-based participatory research. How is that different?

**Kiffer:** Patient-oriented research usually begins inside a health system and engages people as patients and caregivers. Community-based participatory research usually begins with a community, defined by place, identity or shared experience, and shares decisions with it in every phase, often from the choice of topic onward. Barbara Israel and colleagues set out its principles in nineteen ninety-eight. They include building on community strengths, equitable partnership, co-learning, and a balance between research and action, and a later version added capacity building and long-term commitment.

**Sarah:** Is the Cedar Valley study an example of it?

**Kiffer:** Not fully, and the reading says so. The topic came from the research team and the health authority. A community-based participatory version would begin by asking communities in the region what they wanted to study. Most of Cedar Valley's engagement with older adults follows the patient-oriented model.

**Sarah:** Let's close the section with tokenism. What can a team actually do?

**Kiffer:** The lesson lists six safeguards. Involve people early, before decisions are fixed. Write down which decisions partners make, which they advise on, and which stay with the team. Pay and support partners, because unpaid engagement favours people who can afford to give their time. Close the loop after every round of input. Give partners control of something concrete. And ask partners at least once a year whether the engagement is working.

**Sarah:** Section Four turns to engagement with First Nations, Inuit and Métis communities. Before we start, I know you wanted to say something about the limits of what the lesson covers.

**Kiffer:** I did. The guidance in this section is general. Protocols for introductions, meetings, decision making, the involvement of Elders and knowledge keepers, and the review of research differ from one Nation and community to another. A team learns the protocols of a specific community by asking that community. Students who intend to do this work need training and mentorship beyond one lesson. And the Cedar Valley arrangements are the choices of one fictional partnership, and other partners would agree on different terms.

**Sarah:** The section opens with what it calls a distinctions-based approach.

**Kiffer:** First Nations, Inuit and Métis are three distinct Peoples, each with its own histories, languages, cultures and governments. There is great diversity within each, too. British Columbia alone has about two hundred First Nations. A distinctions-based approach plans engagement with the specific Nations, communities and organizations involved. A pan-Indigenous approach, which treats everyone as one group, can lead a team to consult the wrong body or to apply one Nation's practices to another.

**Sarah:** How does that play out in Cedar Valley?

**Kiffer:** The health centre serves several First Nations communities and is the team's partner for research with them. But the region's older adults also include First Nations people living in Cedar City away from their home communities, and Métis and Inuit residents. The health centre does not represent all of them. So the team records those groups separately and plans to ask the health centre, and organizations serving Indigenous people in Cedar City, how best to approach each.

**Sarah:** What does the national ethics policy say about this?

**Kiffer:** The Tri-Council Policy Statement, the research ethics policy of Canada's three federal research agencies, has a whole chapter on it: Chapter Nine, on research involving the First Nations, Inuit and Métis Peoples of Canada. In general terms, when research is likely to affect the welfare of a community, researchers are expected to seek engagement with it, and the nature and extent of that engagement are decided jointly. Researchers respect community governance and customs, and many communities have their own research review processes.

**Sarah:** Does community approval mean individuals no longer have to consent?

**Kiffer:** No, and that is an important point. A community's approval and each person's informed consent are separate requirements. A community agreeing to a study never removes an individual's right to decide whether to take part. Lesson Five covers consent in detail, and it returns to Chapter Nine as part of the ethics application.

**Sarah:** Let's talk about data. The lesson spends some time on OCAP.

**Kiffer:** OCAP is a registered trademark of the First Nations Information Governance Centre. It stands for ownership, control, access and possession, and it names First Nations principles for how First Nations data are collected, protected, used and shared. Health Sciences two thirty introduces the principles. This lesson asks how you put them into practice, and each First Nation interprets them in its own way.

**Sarah:** So how do you put them into practice?

**Kiffer:** The reading turns each principle into a question for the research agreement. For ownership, who owns the data collected from community members? For control, which decisions need the partner's approval? For access, how will the partner get its data, and who decides on requests from others? For possession, where are the data stored, and what happens to them at the end of the study?

**Sarah:** And Cedar Valley reached its own answers.

**Kiffer:** It did. For example, two health centre representatives sit on the steering committee, any analysis that reports results for its communities needs the health centre's approval, and a copy of the community dataset is held on the health centre's secure server. Another First Nation might reach very different answers.

**Sarah:** What about the linked health records from Population Data BC? Those come with their own rules.

**Kiffer:** They do. Those records stay under the conditions set by the data stewards and are analyzed in a secure research environment, so the team cannot hand them to any partner. The research agreement therefore covers what the team can control, which is how results from the linked data that concern the health centre's communities are reviewed, interpreted and reported. The team raised this question at the start.

**Sarah:** OCAP is specific to First Nations. What about Inuit and Métis communities?

**Kiffer:** Inuit Tapiriit Kanatami published the National Inuit Strategy on Research in twenty eighteen, which sets out Inuit priorities, including Inuit governance of research and Inuit control of data. For research with Métis people, Métis governments and organizations are the starting point, and some have their own research principles and review processes. Beyond Indigenous data, the EGAP framework, which stands for engagement, governance, access and protection, was developed in Ontario for health data collected from Black communities.

**Sarah:** Let's talk about the research agreement itself. What goes into one?

**Kiffer:** It sets out how researchers and a community will work together, usually covering roles and decision making, data governance, the partner's review of findings and manuscripts, benefits, costs, communication, and how the agreement can change or end.

**Sarah:** The reading has a story about a request the team did not expect.

**Kiffer:** Yes. While they were negotiating the agreement, the health centre's director asked that results for its communities always describe the community supports older members value, alongside any rates of loneliness. Doctor Hart agreed to add two survey items on participation in community activities, chosen with the health centre, and a matching interview question. It also produced findings that the health centre later used in a funding proposal for its own programs. Because the request was specific to this partner, the team did not apply it to other communities without asking them.

**Sarah:** The lesson ends with the engagement plan. What is it?

**Kiffer:** A short document that says whom the team will engage, how, when, at what level and with what resources. The Cedar Valley plan fits on one page under eight headings: purpose and principles, interest holders and roles, levels by phase, activities and timeline, resources, closing the loop, risks and responses, and review.

**Sarah:** Why insist on one page?

**Kiffer:** Because a one-page plan forces you to set priorities, and partners can read it. It also needs a specific budget. In the Cedar Valley example, the illustrative engagement budget is eight thousand dollars. Six advisory members receive fifty dollars per meeting for twelve meetings, which comes to three thousand six hundred dollars, and the rest covers travel, interpreters and community presentations. Engagement that is not budgeted is often the first thing cut when money runs short.

**Sarah:** So what does a finished engagement plan look like?

**Kiffer:** The Cedar Valley plan is a good model. It draws on a register of more than a dozen interest holders and on a power-interest grid and an influence map with a reason for each placement, and it states a level of engagement for each main interest holder in each phase, from setting the questions to sharing the findings. Each promise in it can be checked later.

**Sarah:** And when a study would involve First Nations, Inuit or Métis communities?

**Kiffer:** Then the team first identifies the appropriate Nation, government or organization, works out with it how Chapter Nine applies, and discusses which data governance principles will guide the work, recognizing that the community sets the terms. That conversation happens before the design is fixed, and it takes time, which is why the Cedar Valley relationship began about a year before the funding application.

**Sarah:** That is a good place to stop. Next week is Lesson Five, on research ethics in practice.

**Kiffer:** Yes, and consent and Chapter Nine carry straight into it. Thanks for listening, everyone.

**Sarah:** Thanks, Kiffer. See you next week on Office Hours.