A subtle and disconcerting shift is underway in the delivery of medical information.
We used to get information predominantly from health professionals but with Web 2.0 technology, it increasingly comes from patients who recount their own experiences and build online communities around their particular condition.
They blog about what happened to them in an easy-to-read, personalised way that is usually subjective, not verifiable and of unknown scientific accuracy. Or they upload a video which is even easier to digest.
“It’s becoming increasingly difficult for static medical websites to compete with this,” says Alan Petersen, professor of sociology at Melbourne’s Monash University. “Patients today have much more control over public discourse than they did in the past with old technologies,”
He says patients undergoing a controversial treatment, such as stem-cell therapy, may get coverage in the conventional media and then build on it through social media.
When they’ve built a following and have sufficient status they effectively have a patient community online where they can collaborate and share information on a new scale.
In the past patients would have shared their story with a personal circle. Today they reach a much-bigger audience across geographic borders.
While some are genuine and relate their experiences sincerely some present an overoptimistic and uncritical view. This is significant because they are operating in a dimension where their
perspective can have greater influence.
Petersen says it is not unusual for patient testimonials to be used as marketing tools by those who provide healthcare on the margins of medical acceptability.
He and a research team from Monash and the University of Melbourne are particularly interested in the way patient perspectives affect stem-cell tourism, an industry driven by hope not science.
Despite the global hype and the almost-daily reporting of breakthroughs, stem cells have only proved effective in a limited number of conditions; bone marrow, skin and corneal transplants.
But the lack of evidence for other conditions hasn’t stopped Australians travelling to China, Germany, India, Israel, the US and Panama for treatments not approved at home.
They are desperately seeking help for conditions such as spinal cord injury, cerebral palsy and multiple sclerosis. In this they are often encouraged by smart on-line marketing, clinics offering a
luxurious experience and patient testimonials.
Petersen says “relations of trust” in our society are changing rapidly in the context of Web 2.0.
“Traditionally we attached trust to particular roles, now it is being invested in unknown others, often with unknown motives, who are offering purported remedies of unknown safety and efficacy.”
The Monash-led team recently conducted comprehensive research into this industry which they describe as complex and multi-layered. They have produced the first study to explore the views of
patients, clinicians, scientists and regulators in this industry.
The team is not so much interested in the polarised debate between scientifically approved treatments and sham remedies as in the nuanced area in between.
“It’s too easy to blame unscrupulous providers and lax regulation while overlooking other factors underpinning the market,” they wrote on The Conversation website last year.
Petersen, Casimir MacGregor a research fellow in sociology at Monash and Megan Munsie of Stem Cells Australia and an associate professor at Melbourne and Monash, say “faith” and “miracle” are the operative words in this industry.
“Stem-cell tourism is sustained because of a religious-like belief in the promise of the regenerative powers of stem cells.”
Peterson says some people feel critical of their doctors believing they don’t know “that much'” any more and prefer to listen to patient testimonials.
Other patients have exhausted their treatment options in Australia and travel in hope to clinics abroad. All they have left to lose is money.
These patients are investing trust and money in what is known as “the economy of hope”. Stem cells are an ideal commodity in this economy because they are conceptualised in such a seductive way that optimism outweighs realism.
They are characterised as magic seeds that can grow into anything and it’s not difficult to understand this give rise to magical thinking.
But the economy of hope is sustained by tangibles, by a combination of online direct-to-consumer advertising, deregulatory policies, government-endorsed medical tourism and service providers who recognise the business opportunity.
“There is an intertwining of the individual’s aspiration and hopes with this broad political and economic terrain which encourages investment based upon a promise of future delivery,” says Petersen.
“But its existence depends on optimism being systematically reinforced. If it’s not, enthusiasm will die off because people tend to invest trust in those things that give them hope.”
Petersen says he and the team want Australia to develop a new response to stem-cell tourism that has greater cognisance of patient perspectives and other factors that shape the economy of the stem-cell treatment.
Although the organisation Stem Cells Australia receives as many as 600 inquiries a year on this issue, he says the true the extent of tourism is unknown because there is no registry.
While there have been cases of side effects and reports of deaths and aberrant growths in the international medical literature, it is not possible to know how many Australians develop complications because the therapy is fairly new and cancer, which is a possible risk factor, can take long time to develop.
“We don’t know where or how the stem cells are being used,” says Petersen. “And there is no easily accessible place where people can go for unbiased information about it.”
NOT NECESSARILY SAFE
Some patients think that if their own cells are used to make stem cells, the treatment is natural and they are safe. “This is yet to be proved,” he says.
This is an important issue within Australia where a growing number of clinics are offering experimental treatments, using the patient’s own cells, to cure conditions ranging from autism to cancer.
They use a controversial loophole that excludes unproven stem-cell treatment from the regulatory framework provided it is performed by a registered Australian doctor, uses the patient’s own cells and is a one-patient treatment.
These treatments are not required to have been proved safe and effective in clinical trials.
According to the Australian Academy of Science about 60 practitioners are offering unproven stem-cell therapies in Australia.
Earlier this month, the Academy released a report entitled The Stem Cell Revolution: Lessons and imperatives for Australia.
It says more providers are now setting up on Australian soil and it recommends better regulations to close the loophole and better access to clinical trials for patients.
Although Australia is fairly competitive in fundamental research on stem cells, it also warns that it is slow to translate its discoveries into treatments.
The report calls for new and better mechanisms to support collaboration between academia, the private sector and philanthropists to close the gap and translate discoveries into cures.
A useful patient booklet for people contemplating stem cell therapy is available from Stem Cells Australia at http://www.stemcellsaustralia.edu.au/
If you are interested in stem cell tourism or want to contribute your experience go to http://artsonline.monash.edu.au/stem-cell-tourism-research-project/