Rise of the pro-patient

In July 2009, Dave Carroll experienced poor customer service at the hands of US carrier, United Airlines, after it damaged the guitar he had checked in as luggage on a flight to Omaha via Chicago. As he received no satisfactory response from customer services, he decided to give the airline an ultimatum: compensation or embarrassment. When United continued to deny any liability, Dave posted his video, 'United Break Guitars', on YouTube. Over five-and-a-half million people have watched his clip, making it one of the most successful viral videos of all time. Its phenomenal success made it impossible for United to ignore Dave any longer.

The story of Dave illustrates the power now held by the consumer following the advent of Web 2.0 and social networking. In the past, complaining would have taken place by 'phone or letter, with reports of poor service unheard by most people unless they were among the very small number covered by a TV consumer rights programme. Today, that complainant can reach out personally to tens of millions of people across the globe with ease. These are consumers who are involved and knowledgeable. We call them 'pro-sumers'.

People have always discussed things that they are passionate about, whether these are their hobbies, such as photography and the latest cameras, or subjects that make them irate, such as potholes in the road. Research conducted by Ipsos MORI in its Global Advisor of March 2009 shows that more people worry about their health than education, tax, moral decline and terrorism. Therefore it is logical to assume that this phenomenon exists in the healthcare world. The question is: what is its impact?

If you search out these patients, you find that they are represented by a small, but growing, vocal minority, with a strong ability to influence other patients. They believe they are informed, although they are sometimes misinformed, and they feel a strong need to share their knowledge and discuss it with people in a similar situation. This group of patients, that l call patient Key Opinion Leaders (KOLs) or 'pro-patients', has always existed. They are the ones who have always been the letter writers or public meeting attendees. What is different now is their ability to communicate via Web 2.0, which means that their newsletter is no longer limited to a small, local audience, but is available to millions of people around the world.

Misconception
The first misconception about this group of patients is that it is composed of people who are all under the age of 30, busy Tweeting 24 hours a day on their iPhones. This is not the case.

If you investigate this group, you will find it populated with people like Iris, who is a lady over the age of retirement, living in the UK, with diabetes. When I first met Iris, I could not believe that she was one of the pro-patients I had been looking for, but once she had told me about her online cake business, and how she searches on US and European websites for treatment news about diabetes, which she collates and sends out to other sufferers via her newsletter, website and online blog, I recognised her as one.

Objectives
Dave Carroll's objectives were different from those of Iris. Dave wanted to embarrass United Airlines. He wanted the world to know how unhappy he was and highlight its poor customer service. Iris, on the other hand, wants to help people. She feels she is an important channel for people to get news and information about diabetes which will help them. It will assist them in their discussions with their physician, help them understand their condition and make them aware of any changes that may be happening in how they are managed. Iris' objective is to be a positive force for people in the same situation as hers and she would be mortified if it were anything else.

Inevitably, this change in the patient dynamic has an impact on the healthcare system and, in particular, on the patient-physician dynamic. The initial response of physicians to an informed patient is negative, either because they believe they are going to have to re-educate a misinformed patient, or because they are not being faced with a patient who will just listen. They have someone who wants to discuss and debate, taking up precious time in a consultation. Ultimately, this may lead to a more informed patient who is more compliant, but equally it may lead to patients who believe they know better than the physician and will ask for drugs they are not entitled to, or will take their medication when they think is the most appropriate time, not when they are directed to take it.

Physicians in countries like Italy and Spain, where the traditional patient-physician relationship is one where the patient is highly deferential, find the arrival of this new type of patient intimidating. They have higher expectations than other patients and can have a more mature attitude towards their condition as they have researched and understood it. However, as a diabetes specialist in Italy told me: "It is easier to give information to someone who doesn't have any, rather than having to re-educate those who have the wrong information...it makes the consultation complicated and makes my life harder."

So, what lessons can the pharmaceutical industry take from this changing dynamic? The first one is to learn from the consumer world. Do not follow the United Airlines approach and ignore this patient group. Embrace and empower these people. Treat them with dignity and respect. Increasingly, they want to know information like the outcomes of clinical trials or research data, so share it with them. Do not necessarily simplify it. When asked for their level of expertise on a website, patients like Iris prefer to click to say they are a healthcare professional, not a patient, as they believe this will give them access to the real information, not a version that has been modified for the broader lay audience.

Second, do not fight them. You can provide them with all of the right information, but you will never stop them looking at, and discussing, sites where the information is incorrect. You cannot play King Canute and stop the flow of information on the internet. Yes, you need to provide access to the right information, but do not believe that you can stop or control the misinformation.

The critical place where you could consider making a difference is with the physicians themselves, both tangibly, through answering questions like where they should direct patients who ask for recommendations for websites and whether there is a guide for safe internet usage, as well as intangibly, by offering advice on how to deal with a misinformed patient or helping them to change their approach to a consultation which resembles more of a peer-to-peer discussion. All too often, we expect physicians to be not just medical professionals, but also psychologists, influencers and experts in the art of persuasion. Assisting with the softer skills that are required for facilitating consultations is where the pharmaceutical industry can help.

Not disruptive
It would be wrong to think that pro-patients are trying to disrupt the consultation process. Their aims are quite the opposite. The critical question is how we can help physicians ensure that this empowered and passionate group of patients is channelled in the right direction. If this can be achieved, they are likely to be more compliant in their medication and have a greater understanding of their condition and thus what they need to do to improve it. It only goes wrong when that information is misinformation or when the discussion becomes conflict rather than debate.

We should not be surprised at the advent of the pro-patient. After all, patients are just consumers with illnesses. We should expect them to act like consumers in all aspects of their lives. This means that those who have a passion and who want to discuss, be involved and influence others will do so as much in the healthcare space as they do in the consumer space. What is different is how the pharmaceutical industry should react to them. It is hard to work with them directly, therefore consider the physicians and how to help them manage their waiting rooms more effectively.

The Author
Sarah Phillips is head of health at Ipsos MORI

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