Interview with Ellen Starr, MSN, WHNP, Executive Director of Grounds for Health

Ellen Starr (left) greeting Grounds for Health Clinical Specialist Aster Tilahun. A Nurse Practitioner, Ellen started at the nonprofit as a clinical volunteer, while she practiced at Planned Parenthood of Northern New England. In 2018, she became Grounds for Health's Executive Director.

Let’s jump right in! Grounds for Health is currently operating in Ethiopia and Kenya, though in the past you all have worked in Mexico, Nicaragua, Peru, and Tanzania. What have you had to adapt to or change as you have grown? How do you manage that…?

Grounds for Health (GfH) has been around since 1996, and over these years our approach to how we do things has evolved, in step with changes in cervical cancer prevention and the areas we serve. But our focus has always been on reaching women in very remote, coffee growing regions. There is a real commonality no matter what country we are in, to meeting the needs of women and their communities. From an equity perspective—as we all know—even in our country, women don’t all have equal access to quality health care. 

Women are such key players in their families, communities, churches, and make up a large percentage of the workforce at the beginning of the coffee supply stream. They have long days! When women get sick or die, it has an outsized impact, and this is consistent everywhere. What we have found to be different, as we work in different places, is language, culture, and the support from Ministries of Health. But always the fundamental goal in any country is to reach the women at the end of the road.

Ellen meeting with Dagmawi Iyasu, Africa Program Manager, over a traditional Ethiopian meal. Ellen is currently in East Africa for a clinical field visit, and attended GfH's launch of the new Centers of Excellence initiative in Ethiopia.

It is hard to be a nonprofit, as the organization needs so much structural support, not just financial. I’m interested in how that changes. How big of a difference do you see in how medical communities receive and support you in different countries?

Very different! Our approach is to screen-and-treat for cervical pre-cancer in one visit, and we know that this works in low resourced areas. We have good relationships with Ministries of Health.  A lot is culturally based and financial-based. The Ministries of Health play different roles in decision making about when and how cervical prevention training happens. 

If a country is interested in what we offer, and also really wants autonomy with medical protocols, we have said absolutely yes...and then make sure the partnerships are really strong. Over the years, we have received a high level of respect for our work, and out of this respectful relationship, we have been ultimately successful introducing new technologies and approaches to women’s care.

But if they are stuck on one way of doing things—that we know will not result in an adequate number of women receiving treatment when needed—we can’t really go forward. For instance, a country might be really interested in a PAP based “western” system (that actually isn’t perfect even in a high income country). The country might be unwilling to acknowledge that Pap is not feasible without well-trained pathologists in significant numbers, and strong transportation and communication channels so women can get results and return for treatment. Without all of these elements in place the whole thing would fall apart. So this would actually require a great deal of additional investment, which they can’t do.

We are very tuned into these nuances of community readiness, and our first step is always to form strong partnerships. This is another way GfH is unique; we work within the public health system. We develop programs that can be implemented in existing models. This means we can help women out in the middle of nowhere because there is almost always some dispensary or health center out there that we can reach. And the medical teams our staff train and support are salaried by their government, so there is a stable foundation for impact.

This is a typical scene at a clinic where women are registered and waiting for their screening.

Was it difficult to put together the single visit approach? Was it new?

I’m not sure of the exact moment when the single visit approach came about, but it was a critical component of our work from the beginning. It did take some time for other health organizations to get on board. Some people were more interested in introducing new technologies; but if you don’t treat on the same day, why bother? Again, it’s often difficult for a woman to come back to receive her needed treatment, in these remote communities.  It’s almost unethical to tell her she has a positive result than not be able to ensure treatment. Same-day screening and treatment are not always easy, but as long as we keep it as the highest priority when we implement programs, we can always make it happen. 

The method we focus on and stand by is our “campaign” model. Our staff set up 2-3 day campaigns, and begin by connecting with Community Health Promoters we have already trained. These dedicated people engage in community sensitization and education as well as the recruitment of women for the campaigns. Then we bring in all our equipment, set up a space with privacy walls (sometimes hung curtains) and women come in. Sometimes the coffee coops will help with outreach and transportation. We have found that women love to get away from their world for the day. Seeing images of women hanging out on the lawn with their babies while waiting for their turn is kind of wonderful. While we focus on how many women we can see (before dark) we ensure that they are getting the best female-focused care. We prioritize privacy, informed consent, and respectful care. On our best day, we can see 120 women! Over three days you are seeing a lot of women in a short time.

Our women-centered models are incredibly important to our success, as long as the underpinning values are held high. But we are nimble so we can change up the model if/as needed.

I’ve heard from others that a lack of child care can prohibit access to healthcare, training, etc. Do you find it is common for coops to give support for transportation? Is it part of your intentionality for women to be able to bring children?

Training clinicians and health workers through campaigns (and ongoing clinical support) is what we do. Barriers for women to access these campaigns are many: time (away from work); childcare; family expectations; permission from their husbands (which is probably one of the hardest things for us in the US to fathom); transportation. The coop can really help with all of these. The coop can support, for instance, informational meetings with the men. Some coops only have the resources to talk us up. So, it varies. The women’s responsibilities in their communities are vast. Taking time for their own care is difficult.

An Ethiopian health center employee is explaining the screening and treating procedure. Multi-day "campaigns" are a way of reaching lots of women, and offer an immersion experience for clinicians Grounds for Health trains.

Do you notice any psychological shifts? Sometimes women feel like they can’t take care of themselves. Health care feels like it is a luxury rather than a need. 

Women, when they come in for health care, experience a person focusing on them and their health. They learn that they are worth the effort to ensure that they don’t die from something they may have seen female relatives die from. They come in fearful. Then they walk away from their screen-and-treat feeling empowered by the opportunity to take care of themselves and being supported by their communities to do that. 

It is harder to make those impacts visible…

Yes, a lot of nonprofits are interested in gender equity and empowerment, but how do you actually talk about those impacts of empowerment? It can seem “soft” and it is not especially measurable…and people like measurables, like how many women we are able to treat in a day.

Coffee co-ops partner with Grounds for Health to contribute to the wellbeing of women who work in their industry. Here, they are helping to transport women to a screening. The Ethiopian women are singing as they arrive at a clinic.

There can be misunderstandings, even between spouses. That empowering experience can really impact misinformation.

We have seen some horrible things because of miscommunication or rumors. That is why we need this strong Community Health Promoters. Depending on the community, if you start with the village elders, shamans, the priest, then everyone starts to think that keeping women healthy matters. But there still will be rumors. HPV (the virus that causes cervical cancer) sounds like HIV. Our Community Health Promoters can correct misinformation in their own communities. 

For instance, since I am a clinician I periodically travel from Vermont and go to the field to do some assessment, evaluation, and refresher training. Several years ago we had started a program in the foothills of a country in East Africa. The coop had identified their most respected members and we trained them specifically as CHPs. It took many hours of slow driving on poor roads to get to this really remote region. And then when I finally arrived, there were no women to be seen! The Community Health Promoter who had been assigned to help with the campaign went out to ask around. And she found out that the women thought the health provider was going to reach in, pull out the uterus, cut it out, and then push it back in. Horrifying! But you can understand where this misinformation came from. These women have never had a speculum exam, and there is something going “in and out”...but it is a probe. We tell them we have “removed” the bad cells…so the language is there, but the story being told was totally skewed. What happened next is so indicative of how we work in partnership with the community. The village priest heard about this rumor and got right on it; he spent his next sermons talking about cervical cancer. And then the women came. It was a powerful man talking positively about cervical cancer care and women’s health. We all worked together.

Grounds for Health often sees women from multi generations, and children are welcome. GfH staff will watch young children while their mothers are being seen so women feel safe and comfortable.

Are you noticing other kinds of disparity when it comes to health care? What else is lacking?

There is a lot. We work with a specific focus because cervical cancer is a preventable disease and also a horrible disease to die from. We aren’t distracted. What hasn’t happened, and it will take a considerable amount of time to solve for, is to reduce transportation barriers. This is connected to economic disparity and limited access to resources. In remote areas, one often needs to travel far to access treatment for cancer, and who has the money to take an airplane to get treatment? Our staff sends me images of cervixes for review, which is part of our supervision and support practices. Last week I looked at 50 images and three were frank cervical cancer, which made me want to cry. So that is why prevention, and catching this before it becomes cancer is so important! Prevention treatment can happen on-site; cancer treatment is mostly unattainable for the women we see. 

Do you have educational materials? Is there anything you can offer a woman with cancer?

When we work in remote communities we are sometimes talking with women who might not be literate. A big issue could be a tribal language. Sometimes our staff doesn’t know how to speak the local language. So when our staff in Ethiopia go out to talk to women, they will be challenged to get the information translated correctly; but they will! Even without language, though, we can express and communicate respect. It’s a high-stake medical situation, so we need to bring in the important element of humanism and go into a community with that fundamental attitude. 

We are so respectful of women we see. When it comes to training staff, people think we are training them about how to identify cervical pre-cancer. And our response is to say we are teaching you that...but we are also showing you how to “treat” women, how to insert a speculum so she doesn’t experience pain, and how to be respectful of her dignity and privacy. These qualities matter!

Clinical specialist Susan Hollinger demonstrating thermal ablation, a cutting-edge treatment device, to a clinician in Kenya.

Without that there will never be equity. Something I have learned in gender equity -- that value set has to be part of the vision, how you communicate and establish yourself. You are integrating with different types of people, and you can’t make that go away. But that respect connects it all together.

It has been a challenge to find women to be on our in-country staff, because women generally don’t have the same education opportunities. The young male clinicians we train might have an attitude that they are more important than the women they see. And we help change that attitude. Watching how they change and adjust is promising. 

We also look at eliminating the idea that we are the “white savior from the West.” We work to show we are partners. For instance, it was really powerful when, as a white woman from the west, I stood up in a village meeting and said I have had HPV. It was so powerful for them to see and hear that; we have commonality and all are susceptible. 

Do you notice other gender disparities? 

To be respectful to those communities, it’s unfair for me to speculate about other gender disparities. I’d only trust local partners to share that kind of information. 

Equity is part of the pragmatic approach. Narrow vision helps you be efficient. That is a super powerful approach. You can’t do everything, but you can do so much!