Patients, Users & Beyond

Patients, Users & Beyond

The consumerism of care and the rise of the patient power


Medtech isnt pharma, goes the argument. The UK isnt the US, so patient voice isnt as important. That may be the status quo, but the times they are a-changing, according to the patient advocates shaking up the way that people think about health. Kathryn Reilly and Claudia Orrell explore

Patient voice

The short-sighted view is that the British customer largely doesn’t have a great deal of choice about where they’re treated, by whom and in what way. We don’t have the choices that the American system allows and, therefore, it doesn’t really matter what the patient thinks. And yet, in every part of our lives, we are becoming more informed and empowered by being able to carry out research online. Many think that it’s only a matter of time until the humble patient voice has a lot more influence than we could ever have anticipated.

Patient power

Barcelona-based Andrew Schorr, an American medical journalist, is passionate about patient involvement, not least because he’s been one. In 1996, he was diagnosed with chronic lymphocytic leukaemia but was lucky enough to get on a clinical trial that has given him lasting remission. His experiences led to the foundation of Patient Power, an online connection to a community of cancer experts, in 2005. Andrew is also the author of The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis.

The need for patient involvement is growing by the day, Schorr believes. In a nutshell, ‘more stuff goes wrong as you age,’ he states. And we all know that populations are ageing all over the globe. ‘But more and more of us are devoted to providing people with content to help them gather information,’ he adds. His most recent venture is Powerful Patients, a non-profit organisation based in Switzerland. ‘The idea is that we can build relationships with patients who might want to talk to the industry. It’s like Facebook for different conditions. We then do regular updates for patients and connect them with experts. It’s a place to find organisations, support and advocacy groups, patient opinion-leaders and others dedicated to our mission of patient empowerment.’

Previously, there’s been a distinct gap between the patient and those making the devices or medicines that might heal them. ‘A high percentage of people have told us they’re willing to speak to the industry so that better products can be developed,’ Schorr explains. ‘When you design a product there’s got to be a need for it… somebody gave me an example of an epi-pen that had a beautiful design. Then a patient saw it and said they wouldn’t use it because of its cylindrical shape – if you put it on a desk, it would roll off. The company had invested several million dollars in developing it but had never thought of that!’

An informed population and their influence

In the past patients were given a fait accompli, but the internet age has blown the system wide apart. Information is much more accessible, people are happy to recommend or criticise anything and everything online, and that helps patients to find the best solution for their personal situation.

The question is, why isn’t the industry reacting to this movement? ‘Some of the biggest players in marketing, like pharma companies, have tried to build their own platforms, but the consumer is becoming smarter and looking for more independent resources they feel they can trust’, Schorr says. ‘There’s this real consumerism developing. You could argue that you sell your product to the hospital or the doctor, but doctors and hospitals are stretched more and more by budgets and time.’

Contrary to the old-fashioned view that patients shouldn’t Google their symptoms, it’s now thought that the more a patient understands what makes sense for them in their care, the more they assume responsibility, and the more efficient the system can become. ‘The right care at the right time for the right person,’ as Schorr puts it.

‘What the pharma industry is realising now is that it can’t only depend upon key opinion-leaders to advise it on what trials should be done – or rely on doctors to recruit enough patients in an effective enough way to move the trial along. There also needs to be greater awareness and anticipation of the fears or hopes of the patient built into the communication so that there is a match made between the clinical investigator and the patient more often. If you think about it, it’s not that different from designing a new product – you need to really understand the need of the consumer. So if we’re talking about cataract contact lenses – and why I should choose one brand over another – we have to hear how it relates to people’s daily lives,’ Schorr continues.

The boom in online resources for patients

‘There’s a social network based in London called, which has a database of about 300,000 patients. It’s often used by those who may have been diagnosed with something they have never heard of before, so they want to connect with the community. Doctoralia is an international doctor directory where specialisms, locations and patient reviews are listed,’ Schorr explains. In the case of the UK, many of those listed are private doctors working in private institutions, but NHS practitioners are listed too. ‘Patients want more understanding of their condition, what treatments are available, what research has been done and what could be next for them clinically. That’s what Patient Power does,’ says Schorr. The benefit for the industry is that it allows developers to see what’s trending in terms of what people are talking about in a therapeutic area.

‘The bottom line is whether the patient’s voice is important in this dialogue?’ adds Schorr. ‘Absolutely, because it’s costly when it’s overlooked. Think of that epi-pen. And it’s not even about being politically correct. Everybody is saying that the voice of the patient needs to be heard and involved – and that it should be ongoing.’

Medical marketing is big in the US and you can see TV ads for items such as hip joints. Orthopaedic surgeons advertise that they do computer-assisted placement of the knee replacement to make sure the joint will be as comfortable and long-lasting as it can for you. They even came out with a knee replacement device that was pink for women! Patients are making decisions based on these communications.

It’s often the higher-end patient who chooses to go private, or opts for elective procedures. The thing about medical technology, or whether people have private insurance, is do they have additional options?

‘I’ve heard people say that the NHS used to be seen as “nanny care”, in that, “we’re the system, you’re the patient, and we look after you”,’ says Schorr. ‘Now, in every aspect of our lives, we’re being marketed to as consumers who have a choice and a voice in what doctor or hospital we choose to go to, what questions we ask, and what decisions we make when we think about our care. It will be documented by a lot of electronic transfer of opinion.

‘A year ago I went to a medtech conference in Brussels, and they kept saying that it was “the year of the patient”. But I didn’t see any evidence of that. Where are the really big companies like Roche Diagnostics or Abbott Diagnostics – the companies that make the diagnostic monitoring equipment that’s increasingly involved in so many conditions? Why shouldn’t they support education in an ongoing way for those who have these tests? Their argument would be that they don’t sell to the patient – they sell to the hospital or clinic. But as they profit from their treatments and devices, maybe they have a moral responsibility to do so. And wouldn’t it be a tremendous service to their customers who are often strapped for time and money?

Another person who feels very strongly that patients need to listened to right now is Boston-based David deBronkart aka e-Patient Dave, author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007, he became a blogger, health policy adviser and international keynote speaker. He, too, got the right treatment at the right time via a clinical trial. He doesn’t pull his punches.

‘Any industry is NUTS if it doesn’t actively seek the perspective of the people affected by its products’

‘Any industry is NUTS if it doesn’t actively seek the perspective of the people affected by its products,’ deBronkart says. ‘A major structural problem in every part of healthcare is that companies seek the thoughts of those who pay them, which too often is a caring but paternalistic intermediary, when the people who know what they could benefit from are the patients themselves, not the payers. I call patients the “ultimate stakeholder”, and it’s beyond ironic that developers so often don’t listen to the people most affected.

Dave deBronkart

Dave deBronkart

‘But a liberating technology change is in the wind,’ he adds. ‘The digitisation of everything medical. If you don’t understand the drastic impact this will have on who holds the power in medicine, just remember this aphorism I cite in my speeches, which countless industries have learned: “When assets digitise, things change fast”. There is no clearer example of this than the Do-It-Yourself Pancreas System package; check the hashtag #DIYPS. (And if you don’t know about hashtags, you had better learn fast!)

‘When you add 3D printing into the digital mix, it’s clear that the future of medtech is too chaotic to predict, but that’s not the point. Except that if you want to be part of that future, you’d better be unconstrained by today’s view of medicine, you’d better fasten your seatbelt – and you’d better pay close attention to what your ultimate stakeholders find,’ deBronkart concludes.

About the author

With well over 100 years experience between us, we've been around the editorial and medical blocks a few times. But we're still as keen as any young pup to root out what's new and inspiring.

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