Crowdsourcing must be a part of pharma's toolbox

Uri Goren shares his thoughts on why pharma is missing a trick when it comes to crowdsourcing and gives his advice on how the industry can use the "medical crowd" to encourage trust and engagement.

Israel's Ministry of Health made a decision last month to launch a polio vaccination campaign, after discovering evidence in recent months that the virus is spreading in Israel through vaccinated children. The campaign makes use of a vaccine that is not part of the routine vaccination, and that caused quite a storm on social networks, where disinformation found fertile ground amongst the crowds of misguided and baffled parents. One could say that the spread of that bad information and the distrust of information coming from authorities are examples of the dangers of opening up the medical discussion to the crowds and those crowds may in fact hinder the ability to practice medicine in a public health crisis.

I will admit that I was sympathetic to this claim at first, but eventually came around to the belief that had the masses been an integral part of the discussion, more connected and more familiar with the information, then perhaps they could have been used to generate ideas on how to disseminate the proper information to their peers. Moreover, they would have enjoyed a higher level of reliability then the establishment depicted as not serving the interest of the public.

In the past, such an attempt was made in Israel, but it was before the significant spread of social media. At the time, the Ministry of Health established groups of citizens around the country trying to deal with major dilemmas in the Israeli health system – the project was called "The Health parliament" but it died before leaving a significant mark.

The world of medicine and pharmaceutical companies operating within it, do not believe in the use of crowdsourcing. The paternalistic model of science, and medicine, in which experts have superior status compared to the crowd has been a part of the medical science and it still is.

"The world of medicine and pharmaceutical companies operating within it, do not believe in the use of crowdsourcing."

The wisdom of the crowd and the ability to use it to solve problems has become much more popular in recent years, especially since James Surowiecki's book, The Wisdom of Crowds and the rise of social media tools, making it easier to implement in practice.

Following its popularity, the question of whether you can use the idea of crowdsourcing to serve pharmaceutical companies has been discussed and different potential models have risen, but to be honest they are far from being widely adopted.

What is a crowd?

A 'crowd' is defined as a collection of individuals who are not necessarily experts on a certain topic, and is a fear of most pharma and healthcare organizations.

Different audiences can be considered as crowds – patients, physicians and all medical staffers and so on. Using crowdsourcing to tackle different challenges of the pharmaceutical industry, from research and development of medications, developing tools for helping patients, dealing with ethical questions and the industry reputation, can help the pharmaceutical industry to lose some of the "bad wolf" image and perhaps even find a way to be embraced by society.

The biggest crowd is that of layman, but all of them have suffered some disease, mostly mild and transient disease, some chronic diseases. It is important to remember that a chronically ill person is no longer "nonprofessional"; he or she becomes an expert in their illness, and the ways to cope with it. The "training process" is of course involuntary, where they acquire habits and insights that are not known to the medical experts who treat him.

This "patient wisdom" is underutilized. However, currently the movement of e-patients is leading a change of thought so patients will be considered more in research and in the day-to-day practice of medicine in the future. This movement's ability to achieve gravitas is due to the digital revolution.

"'Patient wisdom' is underutilized."

Sharing with these communities and listening to their needs, learning and discovering insights through crowdsourcing can have a huge contribution to dealing with the problems of pharmaceutical companies, especially in adherence to medications and improving patients' quality of life.

The medical crowd

Physicians, nurses, psychologists, scientists and others are also "crowds" and they have the ability to contribute from their knowledge and experience. This source of information is only used partially by the pharma industry.

Pharma has been utilizing that knowledge using the so-called Advisory Board, where they asked renowned experts to provide insight and advice to companies. But, are the opinions of only 10-20 experts enough to fully address the questions at hand? No. GPs can also provide insights and knowledge that are essential, but once again are not utilized enough.

Digital tools and the internet have been a major force in breaking the "knowledge dam" and enabling the flow of information and knowledge. Now these tools also allow pharmaceutical companies to engage a much wider audience of experts. Discussion forums and special social platforms can be used to discuss different questions and receive feedback and insight by crowdsourcing doctors on a regular basis, not just as a marketing tool. This can help companies improve their performance, lower their research costs, and create products with a much more speedy market adoption.

A classic example of the crowd wisdom in this context is Foldit, a scientific protein folding game that allows scientists and gamers to solve complex puzzles in short time providing major breakthroughs. The examples of using Foldit, especially such as the one involving finding an HIV protein cutting mechanism, sound like a once in a lifetime fairytale, but the same principle could be used in other scenarios as well. These scenarios can include the solving R&D problems, trial design, patients' ease of use and more.

If pharma wants to do that, they must release themselves from their self-made chains, open up, and share their knowledge. While some may fear some initial pains with the spread of information to competitors, in the long-run the benefits will outrun any losses.

"Engaging with the community throughout the whole process and making "the crowd" a true partner is the secret for success."

In addition, companies must give back to their helping community. Engaging with the community throughout the whole process and making "the crowd" a true partner is the secret for success. Generating an idea from the crowd and then breaking the relationship is not truly crowdsourcing on top of being bad policy.

One of the most interesting examples of using true crowdsourcing is a biotech startup called "Transparency Life Sciences", which is trying to build its entire research program based upon crowdsourcing and thus save on investment as well as improve the efficiency of the development process. This is still mostly an idea, but it seems to hold up. A visit to the company's blog shows a collection of successful projects in the field of medical crowdsourcing.

So what is the recipe for success? Well, there is no cookbook, but a good way to start is first clearly define the problem or challenge, and then choose the platform where this will take place. Then bring it to the attention of the relevant crowd and motivate it to participate with different techniques. Encourage public dialogue and discourse to refine an idea or a proposed solution. It does not work every time, but it has to be part of the toolbox for pharma. As it reaches more people, innovation and new possibilities will arise.

There's no doubt that crowdsourcing requires a leap of faith, but the current crisis of global healthcare is a time for this kind of a leap, as they can improve the effectiveness, compliance, research and development capabilities.