Face to face with the person

By David Clark

David Clark is the Alliance's Head: Healthy People.

"I’m the coordinator of this centre, a peer-mentor and I also direct the traffic at a stop light. Oh, and I’m a beautician too. And this group, these beautiful human beings, are my family.”

This was how our host introduced herself when I visited a care and support centre for transgender people and men who have sex with men in Delhi a couple of weeks ago.

More on the “directing the traffic at the stop light” later. The way in which our host introduced herself highlights the importance of being person centred when working with individuals who make choices about their health and lives amidst a complexity of roles and identities.

Person centred approach

The Alliance strategy talks about “taking a person centred approach” to our work, but what does that mean in practice? 

A group of us from the Alliance secretariat and Linking Organisations got together to distil what a person centred approach really comes down to, and to create something meaningful to guide our work.

<p>A transgender client at a centre for sex workers in Tirupati, India.</p>A transgender client at a centre for sex workers in Tirupati, India. © Jenny Matthews for the Alliance

Challenges to a person centred approach

I was struck during my trip to India by how challenging, but also transformative, a person centred approach can be in practice.

A basic premise of a person centred approach project is the moral imperative to think about people as human beings, not numbers on a spreadsheet, defined by their HIV status, or whether they are ‘’lost to follow up” in the conveyor belt of service delivery.

The most obvious challenge to a person centred approach in India is the “tension of scale”.  Alliance India’s programmes reach over a million people.  Working with a million people to do anything means you need to be pretty organised, and organisation needs structure.  Flowcharts, processes and procedures to get things done to a certain standard.

Throw into the mix a government structure that constantly throws manuals, standards and modules at you and it becomes clear that being “person centred” is not easy.

"Lost to follow up"

Spending the morning with an outreach worker, the task of tracking down those “lost to follow up” (LFU) is part of their daily reality.  Every month each one of them are given a list of around 70-150 (depending on the geography) people who haven’t turned up for their anti-retroviral treatment.  Their job is to “track them down and bring them back into the system”.

They go to great lengths, sometimes finding out that the person has died, that they’ve migrated out of the state, that they are now accessing treatment privately, or that they have simply disappeared.

About ten of them come back “into the system” each month.  Why they leave in the first place is a constant conversation topic: side effects from treatment, clinic hours not being suitable for them, or perhaps being convinced to try a herbal remedy.

But it’s not the outreach workers’ job to investigate this. They must track down the LFUs and bring them back.  The government has set national key performance indicators around finding LFUs, and this has elevated the LFU data to a high art form.

Looking at the bigger picture

Alliance India’s staff are looking at the bigger picture. I was in a meeting where Umesh Chawla, Alliance India's Programmes Director, asked his information team to add two questions to the monitoring questions regularly asked of people in that situation: why they left and what could be done differently.

The electronic monitoring, evaluation and learning system Alliance India uses collects data about tens of thousands of people within a few weeks. As Umesh said, these are individuals, with their own reasons.

If it’s poor quality medicines that is stopping them from coming back, we need to work on that. If it’s long waiting times, that’s where we go.

“It’s not about dragging them in, giving them their monthly quota of pills and sending them back home in the hope they will come back on their own accord for rest of their lives. If it’s poor quality medicines that is stopping them from coming back, we need to work on that. If it’s long waiting times, that’s where we go.”

It’s this kind of insight a person centred approach can give us.  Instead of thinking about our part in “the system” we must think about the people accessing (or not accessing) the services, and design the services around the people in all their diversity.  However, when “the system” pays your salary, that can be a tough call.

Taking action as a community

Finally, let’s circle back to the question of “directing the traffic at the stop light”.

Transgender people and members of the hijra community are commonly seen at major intersections in Delhi, offering blessings in return for money.

Our host said: “We wanted to change how the public see us – not just this negative thing of begging for money.  So we got this thing going with the Delhi traffic police.  They trained us in the basics of road safety.”

“So we now work with them at major intersections to talk to people about putting on a seat belt, wearing a helmet – being safe on the road.  We are being seen doing something visible, respected, positive and taking control of how we are seen”.

We wanted to change how the public see us – not just this negative thing of begging for money

And this is another value of seeing the world with a person centred lens – taking action as a community and addressing the root cause of exclusion.

I came back to the UK with a strong sense that we are onto something important with the idea of a person centred approach.  WHO has already started talking about “person centred, integrated healthcare” and UNAIDS about “differentiated models of care”.

But we have something powerful to contribute from our collective experience as an Alliance of community organisations, and it must genuinely be about shifting power. The power to choose the best option for me, and the power to shape the world around me with others.