All the decisions we can’t see

Let’s be honest, January was a bad month for healthcare news coming out of China.

For starters, at the end of December, a Chinese court sentenced He Jiankui to three years in prison for operating an illegal medical practice, which includes using a fake ethical review certificate and misleading participants about a study’s risks, and also violating an ethics guidance from 2003 that barred the reproductive use of research embryos.

You may remember Dr Jiankui as the individual who made the world’s first genetically edited babies by recruiting couples in which the man was HIV positive but the woman was not, as part of an effort to create embryos with a genetic mutation that made the couples’ offspring protected from the virus.

Esteemed bioethicists and scholars, such as Josephine Johnston from the Hastings Center that produces books, articles and other publications on ethical questions in medicine, science and technology that help inform policy, practice and public understanding, as well as Robin Lovell-Badge, a stem cell biologist at the Francis Crick Institute, have both acknowledged that He Jiankui’s work straddled a line that might have got them in hot water in both the US and the UK.

In fact, Lovell-Badge said in a statement distributed by the United Kingdom’s Science Media Centre that “both prison and a fine would have been the likely penalties if someone had done what [He Jiankui] did in the UK”.

And then, in early January, China informed the world about a deadly new coronavirus that has been causing severe respiratory illness and death among its citizens.

As of 6 February, in China there were over 28,000 confirmed cases and 565 people have died there; in addition there were more than 220 confirmed cases outside China and there has been one death in the Philippines.

On 26 January, the New York Times wrote: ‘The outbreak has drawn fresh attention to China’s animal markets, where the sale of exotic wildlife has been linked to epidemiological risks. The Wuhan virus is believed to have spread from one such market in the city. The SARS outbreak nearly two decades ago was also traced back to the wildlife trade.’

These two scenarios highlight an important aspect of public health and health policy: complex decisions that require almost real-time response are only as good as the information upon which those decisions are based.

In the case of He Jiankui, many countries have policies and laws in place against germline gene editing. But because the court proceedings, documentation and testimony in this case have not been made public, it is impossible to know the details surrounding the events that may have facilitated this ‘rogue scientist’s’ behaviour.

And because we don’t have those details, implementing new health policy to prevent recurrences of this situation remains difficult. Not impossible, but difficult. Some will argue that US and UK laws are expansive enough and the penalties imposing enough on their own merits that we need not fret about a single scientist’s actions in a universally agreed upon opaque scientific ecosystem.

Others will argue that the scientific community’s overwhelmingly negative response and outrage will discourage this from happening again. I disagree.

And in the coronavirus situation, the same New York Times article went on to say: ‘Conclusive evidence about how this outbreak started is lacking. Although officials in Wuhan first traced it to a seafood market, some who have fallen ill never visited the market.

‘Researchers have also offered disparate explanations about which animals may have transmitted the virus to humans. China’s record doesn’t help. During the SARS epidemic in 2002 and 2003, officials covered up the extent of the crisis, delaying the response. The Chinese government has promised far more transparency this time, and the World Health Organization (WHO) has praised its cooperation with scientists.’

I’m sure we all feel better that a non-partisan agency like the WHO has authenticated the cooperation of the Chinese scientific community in 2020 but the issue is far more complex.

We need to understand the larger social and cultural issues that may be driving the underlying causes of these deadly illnesses. And in order to do that, the Chinese government’s openness to the rest of the world’s questions and, ultimately, its willingness to revise public policy to reflect a greater harmonisation for global public health will be put to the test.

This is not a ‘China’ issue. It’s a transparency issue. Whether it’s the reporting of a measles outbreak in America or the promulgation of information on Ebola cases in West Africa, we are all responsible because the world needs more transparency.

January was a bad month for healthcare in China

This article was originally published here.

Someone like you

It is not entirely uncommon for consumer- packaged goods companies or luxury retailers to pay Facebook, YouTube or Instagram ‘stars’ to endorse and use their brands. Typically, this individual has the profile of a customer that the manufacturer or retailer wishes to target, with one mandatory characteristic: tens of thousands (if not more) of followers on social media.

In healthcare, this trend has started to gain significant traction over the last few years. These individuals – patient influencers as they are known – are becoming more and more ubiquitous. Most of the mainstream information on the role of patient influencers focuses on the inherent conflicts of interest, whether this activity transgresses the tight rules around direct-to-consumer advertising and, pragmatically, where we can find such people. Rarely do we discuss the policy/public health and behavioural implications of this growing trend.

In truth, we have known about influencers for years. Malcolm Gladwell described them in his landmark book, The Tipping Point: How Little Things Can Make a Big Difference, published in 2000. Gladwell introduced us to ‘connectors’ and ‘mavens’. Connectors are, well, in the habit of connecting people. However, it is not only the simple act of connecting that is of importance but, as Gladwell states, the sheer number of connections that these individuals can bring together. Mavens, in contrast, are not about people and connections. Mavens share knowledge and spread information. So, in essence, patient influencers are part connector and part maven, which is what makes them incredibly valuable to the pharmaceutical companies that are now paying such influencers to share their experiences about products and raise awareness about disease states.

But there is one other factor that makes these influencers incredibly persuasive and valuable beyond the fact that they know a lot of people and are good at sharing information: they look like us. If not physically, then emotionally and experientially. The academic literature has reinforced what we already knew intuitively, which is that we feel more closely aligned to people who are similar to us and that, more likely than not, we are predisposed to find such people credible.

It is this hallmark of having ‘walked a mile in your shoes’ that draws us to these patient influencers. They know what we are feeling, what we have gone through and what is around the corner. They are connectors and mavens. But they are also part prophet and part therapist.

So, with this backdrop as our foundation, what about the policy and/or public health implications of this trend? Well, let’s look at two aspects of this. Firstly, the ability of patient influencers to aggregate the opinions and experiences of patients and potential patients is tantalising. We may soon have incredibly rich insights into traditional ‘black box’ topics as a result of these patient influencers and their networks. Imagine being able to better understand if ‘redness on the skin’ is an injection site reaction, described in (almost) real time. Or being able to ascertain patient compliance to therapy. Or comprehend the packaging and design of your pill bottle or blister pack. While there are challenges with such ‘social listening’ platforms, such as the inability to distinguish between ambiguous or ill-defined terminology, the artificial intelligence and deep learning algorithms being developed may soon get us there.

The second insight from this growing trend of using patient influencers is that we may drive unnecessary healthcare utilisation. One of the best public databases in the US for looking at the online habits of patients, the Health Information and National Trends Survey (HINTS), demonstrates that people are increasingly using the internet to seek health information and that they are increasingly comfortable with it as their first option for potential answers. In other words, for those who are undiagnosed, we may be driving people to their primary care providers needlessly, seeking diagnosis of symptoms. And for those who are already diagnosed, we may be driving these patients to seek more expensive treatment options as they see patient influencers with their same illness using treatment modalities that provide high quality of life and wonder ‘what about me?’

Barring a major regulatory or legal barrier, it seems reasonable to believe that patient influencers are here to stay. While sharing disease and product information, connecting patients with each other and generally providing an avenue for patients to not feel alone are all incredibly important features of this growing trend, perhaps its best application will be to demonstrate impactful public health and policy implications.

Patient Influencers are becoming ubiquitous. Should we care?

This article was originally published here.