Advies: Krag vir die mense - pasiënte is die kern van die gesondheidsagenda

By European Cancer Patient Coalition and EAPM Patient Representative Professor Francesco de Lorenzo (uitgebeeld)

Given the meteoric rise of personalised medicine there has surely never been a better opportunity to put patients at the centre of health care in Europe, to empower them in every respect and to give them the final say over their own data.

It seems incredible in the 21st century that patronizing, over-protective rules and attitudes concerning personal health data in many cases disbar the patient from not only having control over when, how and where this information is utilized but often blocks him or her from even having access to it.

Times are changing fast and, while there are certainly moral, ethical and legal issues surrounding what we have come to call ‘big data’, patients these days are knowledgeable about their own conditions and, in cases where they are not, many want to be and they most certainly have the right to be. Owning their own data is one key way to moving things forward in this regard.

Personalised medicine, or PM, will open the door to better, more timely and cost-effective treatment for Europe’s 500 million citizens spread across 28 member states. But it can only achieve its full potential – certainly when it comes to, for example, rare cancers – by the use of smaller, more-targeted clinical trials gathering cross-border, sub-group information and, crucially, making it available.

Even to run these trails with a group of relevant patients requires the sharing of personal data and the citizen should have the final say on where this goes. However, it is often not the case and is one of the biggest barriers to access to treatment for those who need it – either to improve their lives or, in many cases, save their lives. Imagine being unable to participate in a trial for a potentially life-saving drug or treatment because a doctor decides you need protecting from your own medical information, therefore ensuring that the clinical trial organiser will never know whether or not you were suitable. It’s a nonsense.

As Eli Lilly’s Gary Lee Geipel, in charge of the company’s PACE initiative put it: “The lack of a patient voice in key decision-making is an historical problem.”

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Geipel conceded that there is “an element of paternalism” when it comes to professionals dealing with patients. “It’s all well-intentioned,” he said, “but sometimes there is a lack of accurate understanding of the reality of what the patient is experiencing.”

The potential of PM is impressive, but it absolutely requires the use of big data and also needs front-line clinicians to be able to understand how to use the information properly in order to make good decisions about the next phase of treatment. With that knowledge comes the ability – and obligation – to pass the information to the patient in an easily-understandable and transparent manner in order to allow that patient to be a key part of the decision-making process. This co-decision can then be based on genetic information and treatment options as well as trial availability, lifestyle or any other relevant factors.

Of course, there cannot simply be a gung-ho attitude to the dissemination of all this personal data, and many patients are wary of sharing it due to very understandable concerns about a lack of control over where and how it will be used, the potential sale of it to their detriment, possible embarrassment and, even worse, stigmatisation through a lack of anonymity and so on. On the other hand, many patients are also aware of the potentially huge benefits to themselves and other citizens that will be a direct result of making this information available. But it’s a complex issue.

Mary Baker, MBE, immediate past president of the European Brain Council, said: “These are ethical and humanity issues and if you leave ethics and humanity out of medicine then you have a problem. We need to be able to communicate with patients to explain the benefits (of sharing their data). There needs to be a debate in society and that is currently lacking.”

One idea that has been mooted is the setting up of data co-operatives, allowing patients total control over who can use their information, when they can use it and for what purpose, all done in an environment of self-ownership and trust. This idea is rapidly gaining credence and will be one of the topics discussed by the Europese Alliansie vir Persoonlike Geneeskunde (EAPM) by sy jaarlikse konferensie oor 9-10 September in Brussel. This will bring together all stakeholders - patients, clinicians, researchers, academics, industry partners, member state affiliates, policymakers plus new MEPs - and is timed to precede the five-year term of the incoming European Commission.

Through its collaboration with this multitude of stakeholders, plus its ongoing STEPs campaign (Specialised Treatment for Europe’s Patients), EAPM is striving to make PM part of EU health policy for the next 20 years and beyond, while putting patients at the heart of the process. Achieving these goals will be a significant step forward.

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