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Using new technologies to capture the patient's voice

Many patients still think they’ve got a condition with a rigid, defined way of treatment, according to a new study
Regulators, payers and medical professionals recognise the patient voice as the missing link in maximising value from the global healthcare bill. Harnessing that voice has never been easy: patients do not speak with one voice, even when they have the same disease. They do not pretend to be impartial when it comes to securing resources for their condition, and many struggle to appraise the risks and benefits of treatments. Despite this, the patient voice continues to gain traction rapidly among all stakeholders in the healthcare world.

Initiatives are being implemented worldwide as notions of patient centricity finally start translating into healthcare practices and cultures that are more open, engaging and accountable. In addition to empowered patients taking control of their own disease education via Dr Google, regulators and payers also are driving this patient-led revolution in healthcare because they want real-world evidence that enables them to continue appraising the safety, efficacy and value of medicines over their full lifecycle. But the movement to make healthcare more accountable and more responsive to patients is not limited to these players. How patients take their medicines, how they respond, what they think of them, and what else they do to help their condition have become critical to the changing healthcare landscape in the US and across the world.

New ways of harnessing the patient voice
Social media channels have long been essential agents of change in the patient empowerment movement. Sites such as patientslikeme.com have challenged conventional scientific methods by applying algorithms to their databases to find patients who qualify for control groups, thereby eliminating some of the bias factors inherent in social media. The results of such studies have been compared with those of controlled clinical trials set up to answer identical questions. The online methods are not only quicker and cheaper than conventional research but also arrive at the same conclusions.

Similarly, market research is being transformed as new methods of harnessing the patient voice are pioneered. California-based Vocalize has created an innovative research platform called Truvio that allows companies to conduct quantitative and qualitative market research where respondents record their voice in real time via their mobile phones. WEGO Health, a company dedicated to identifying and empowering health activists, has developed a platform for identifying the leading patient influencers in any disease area and has partnered with Vocalize to license their technology so that any company can get insights from patient influencers in 24 to 48 hours.

Everyone who joins the WEGO Health network is asked to fill in a questionnaire to gauge their level of social engagement – the channels in which they participate and the number of people they reach on an ongoing basis. The goal is to understand their online activity level and influence with respect to health and to develop a relationship with these patient influencers, supporting them in their efforts and nurturing an ongoing engagement.

Influence is not easy to measure uniformly as patient communities have different population numbers as well as different issues that concern them. Each condition has its own unique online community and experience; in rare diseases, for example, each follower is weighted more highly than in a more common condition like diabetes. But their involvement in their respective communities comes across in terms of the roles they play, the information they uncover, the grasp they have on the condition and what it means for patients on a day-to-day basis.

Patient Empowerment study: the patient panel
In a study using two of WEGO Health’s largest communities, we sought insights from community leaders in the patient empowerment movement by surveying people living with cancer or diabetes. These disease areas were selected because they affect large numbers of patients and are both highly competitive on the treatment front. But a third, and focal reason, is that it provided the opportunity to see whether differences are uncovered in the responses from people in a primary care therapy area and one that is more specialised.

The sample sizes were small, just 30, compared with the thousands that are typically recruited via more traditional market research methods, but because they are actively engaged in an average of six sites devoted to their condition and are highly influential in terms of levels of social engagement, their collective reach can be shown to have touched a total of 817,499 other people with related concerns.

Typical panelists make an effort to engage with the best doctors, to know the treatments - both on the market and in development - to appreciate what they cost and how they are administered. They use this knowledge along with their own experience of living with the condition to connect with as many other people as possible. While there is no one ‘formula’ for becoming an online health activist, the common thread is that these patients have earned the authority to talk about their condition.

Patient Empowerment study: the method
We wanted to hear the authentic voices of these citizen experts about the changing healthcare landscape and the role for empowered patients in shaping that. To that end the patient empowerment study asked three questions to explore how empowered patients are thinking: where they feel the online health movement is headed, what is spurring it on and, conversely, what is holding it back.

Two more sets of questions asked the panelists about recommendations they make to their own communities and also, given the chance, those they would offer to the CEO of a pharma or medical device company. These questions were answered in the experts’ own voices via mobile phone.

Patient Empowerment study: the results
Unsurprisingly, virtually all participants were enthusiastic about the growth of the empowered patient movement and strongly agreed with the statement that everyone needs to join up.

1. Drivers of the patient empowerment movement
Panelists believe that technology is driving the patient empowerment movement. The ability to talk and share information online vastly outstrips busy physicians, costs and mistrust in the healthcare system as the principal driver of the empowered patient movement.

Diabetes and cancer influencers agree that technology is the principal driver, but the diabetics were twice as likely to cite “realities of healthcare”, which translates in part as lack of doctor time. Trust (embracing such factors as perceived lack of transparency and product safety concerns), meanwhile, was significantly more important to cancer patients than to the diabetic community.

2. Brakes on the patient empowerment movement
The picture is more varied when considering the factors impeding the empowered patient movement, with the top two responses relating to the doctor-patient relationship. One is from the perspective of the doctor resisting patient involvement, and the other comes from the patient who is uncomfortable questioning the doctor.

What is surprising is the extent to which patients from both primary care and specialised care were speaking with a consistent voice. While there were some differences, one might have expected patients with diabetes to be able to live happily for years while remaining in control of their illness because it is a managed condition. In contrast, there are much more severe repercussions for patients with cancer in terms of likely outcomes and quality of life.

However, the argument can be presented that diabetes affects every aspect of day-to-day life, which may explain why these patients are just as interested in new information as people with a more critical condition. The individuals also spoke fairly unanimously when it came to the voice-response questions.

Advice to fellow patients
Perhaps the biggest surprise from this study is the extent to which patient influencers recommend to other patients that they should be willing to walk away from a relationship with a healthcare professional. They are saying that if a patient is not getting what he or she needs from a doctor, that patient should find a new doctor rather than just seek a second opinion.

Another highlight was the extent to which these patient influencers are challenging other patients to take responsibility for their care. They recommend recording symptoms to share with the doctor, taking responsibility to ask questions, more than once if necessary, and being proactive about prevention, not just treatment. Ultimately, it shows that many patients still tend to think they’ve got a condition with a rigid, defined way for it to be treated by others, rather than personally managing it from a more holistic perspective.

The author
Brian Mondry, vice president, integrated strategies & digital solutions, Kantar Health

28th May 2014

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