Connecting Dots

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In the summer of 2015, Greg Owen was 35 and working part-time as a barman. He had come to England to train as an actor before finding his way into London’s bacchanalian nightlife. That summer, he was trying to make a difficult decision.

He had heard about a new drug regime that was being used to prevent HIV. The medication’s brand name is Truvada, and the regime – which involves taking this antiretroviral pill every day – is dubbed PrEP: pre-exposure prophylaxis. Owen, being gay and fearful of contracting the virus amid this unleashed world, couldn’t decide whether to start taking the drug, let alone how to obtain it. PrEP was not available on the NHS and a private prescription would cost about £500 per month. But a major NHS study was underway to ascertain how effective the drug was, and who should be given it. The study, called PROUD, was being run by Professor Sheena McCormack.

On 11 August 2015, Owen posted on Facebook to let his friends know that he planned to begin taking PrEP. A friend, who was HIV-positive and had been prescribed the drug as part of his treatment before switching medication, offered him some spare pills. Owen’s plan was to start taking them and blog about his experiences. The day after the Facebook post however, he went to a sexual health clinic to double-check he was HIV-negative before taking the pills. Moments later he found out he was positive. He had missed his chance to prevent it.

The following evening, aware that his friends on Facebook would soon be asking how he was getting on with PrEP, and while working a shift in a gay bar, Owen posted an update on the site telling everyone he was HIV-positive. That single act triggered a chain of events that would change everything.

“When I came out on my break two hours later, I had 375 likes, 175 comments, 50 shares. I was like, ‘Sweet Jesus,’” he says. “Then I opened my Messenger – streams of disclosures and supportive messages from people. I must have had 50 or 60 people in two hours saying, ‘I can’t believe you’ve done that, I’m HIV-positive as well and I haven’t told anyone,’ or, ‘I have only told my family and you’ve told 5,000 people.’”

But then the messages started changing. “People were like, ‘What is this PrEP thing and if you had it why wouldn’t you have become HIV-positive?’ It got to a point within a week where I would get 10 people a day asking me about PrEP. Shortly afterward, through his underground contacts in the gay community, Lewis posted overseas websites where PrEP could be obtained.

The response was unbelievable!

“McCormack said, ‘It’s all very well us doing this – professors, doctors, researchers – but you did something that none of us could have done. You convinced people that they would want to use PrEP because you showed them how easy it was. And then you implemented support for them and then made it easy for them to buy it. None of us could have done that because none of us are you.”

The efforts of Greg Owen are directly attitubible to tens of thousands fewer HIV diagnosis in London alone over the two years. “It’s indescribable,” McCormack says. “It’s the ultimate reward for everything you do – or you try to do – to actually see this kind of difference. It’s the impact you dream about.” (Story of Greg Owen)

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Community Healthcare Concierge

Greg Owen wasn’t a doctor. He wasn’t a social worker. And he wasn’t the government. Above all he was a connector. All while be sleeping on friends’ couches, unemployed and being hit with a  HIV diagnosis – he did something no one else or no other organization had been able to do. While we can’t all be Greg Owen, in fact probably none of us can – we can take much from his approach and success.

The American healthcare industry is in dire need of a Greg Owens makeover. Much of the time navigating the system is like wandering a maze of disconnected silos. Each silo offers something, but what that something is and how it relates the others is anyone’s guess. This is especially problematic for those overwhelmed by chronic conditions. Providers often do their best with the medical side of the equation – the other sides, “life outside the clinic” is too often left to chance. Patients (Members) and caregivers normally just get by with what it minimally required to live a semblance of a normal lives. What if instead of just “getting by,” the process of well-being included someone to guide us down the “Road to our Perfect World … potholes and all.”

I call this role the Community Healthcare Concierge (CHcC). The term concierge is most equated with the casino industry – but really a concierge is someone who takes care of whatever you need, especially when in an unfamiliar place. And it’s safe to say that having a life-altering medical condition (if not threatening) engulfed in the healthcare system is an unfamiliar place.

In the cancer world, let’s look at the “concierge” as an enhanced version of the current navigator – but not restricted by the boundaries of the healthcare provider. Their resources or toolbox include the entire community. Their goal is to empower the patient (Member) by uncovering resources and opportunities for them to not only heal, but to engage and develop the self-efficacy needed for them to be part of the solution to their problems. Initially those with chronic conditions, and most specifically cancer such as myself, would be excellent prospects for the Community Healthcare Concierge Initiative. After that the Initiative can expand to other chronic conditions such heart disease, hypertension and diabetes … with the well-being of the general public following after that.

The CHcC breaks down silos and connects the dots by showing how the role of community and the support it can bring is integral in any person’s health and well-being. While the healthcare provider is irreplaceably important, it’s not necessarily the center. The center of our health and well-being is ourselves and how we see we can make difference in our own prognosis. The role of the provider through the CHcC should be not just to provide treatment, but also assist wherever they can in enabling the Member to be prepared and resilient before and after the fact. 

It’s also important to understand the CHcC Initiative is more than just a person though – it’s a system and a process. In fact, it’s technically a crowdsourced community effort of everyone working together for the collective good. The provider CHcC is merely the face of the initiative.

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The Conversation

Center to the Community HealthCare Concierge‘s role is the Conversation. The Conversation is actually an in-depth interview with the Member, one where the questions lead far from just medical history. From the Conversation, the CHcC will be able draw the Road Map that will guide the patient and their stakeholders down the road to engagement and well-being. The Road Map will maximize all available resources within the walls of the clinic and outside in the greater community. The CHcC will not only map a route, but ideally establish benchmarks as well as monitor a Member’s progress.

Topics of the Conversation:

  • Interests, habits and behaviors
  • Goals, aspirations and their Perfect World
  • Contacts and stakeholders

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A Community of Engagements 

As expected, the Community HealthCare Concierge will have at their disposal the resources of the provider, medical as well any financial aid that may apply. But that’s only the obvious part of it. The CHcC Initiative is the connector for the community that brings the small business, non-profit and provider ecosystem together in an integrated approach of engagement for community well-being. What these different players offer are called Engagements. Some Engagements focus on the physical, some on the mental and some aim to enhance our social and civic well-being through community interactions. Based on the information obtained during the Conversation, specific relevant Engagements can be prioritized in Member communication optimizing health well-being outcomes.

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