As confusion among the public and health professionals reigns, our big data collaboration gets into gear
By Rob Verkerk PhD, founder, executive and scientific director
You might be among the many who take some kind of nutritional or herbal supplement most days of the week. You might exercise once or twice, or even 3 or 4 times a week. You might always get your 7 or 8 hours sleep a night, or perhaps you hardly ever manage it for one reason or another. You might also go to see a doctor from time to time and take the odd prescription medicine. Or perhaps not – you might be a die-hard natural health protagonist and be among the over 50% of responders to our currently active survey who felt pharmaceutical drugs were “of no importance” to them in their current management of their health. But you might also visit a natural health practitioner of some sort to deal with a stubborn health problem. Perhaps you also get in some meditation or yoga, may be even some every day. The fact is that no one can tell you from any kind of objective scientific perspective which of the rash of things you are doing are having more or less influence on your health.
The fact of the matter is, for most people, they don’t really care. They — or should I say we — care mainly that we get better or stay healthy. We may also want to achieve a level of health that is better than average. We may want to see our health flourishing and achieve a level of resilience that we’d previously only imagined was possible.
The Balens' Forum: David Balen (front left), Rob Verkerk (front centre) and Yvonne Schreurs-Tauber (front right) from VBAG, an umbrella therapist group in Holland
Yet we have no scientifically based systems currently available to us that measure this overall experience of the environment that influences our health and resilience. We refer to doctors, clinics and hospitals as our healthcare system. But in reality, our healthcare system is so much more than this. It’s everything we do with and without the guidance or intervention of a practitioner and more and more science is telling us it’s what we do when left to our own devices that probably has the single biggest influence on our long-term health.
This is what we call the real world – or TRW for short! It’s about as different as you can get from the experimental conditions of a randomised controlled trial – or RCT for short. It’s also why many academics who are involved with trying to understand more about the best ways of managing our health are increasingly looking to means other than the RCT – long upheld as the gold standard of evidence – to evaluate the effectiveness of different interventions and self-care regimes.
Bottom line is that we don’t have any good methods that look at the whole ‘healthcare system’ to which our bodies are exposed. This takes into account all the things we might be exposed to related to health professionals (e.g. drugs, supplements, manipulations, healing, other interventions) and all aspects that are related to our own self-care (notably nutrition and lifestyle) that might or might not be derived from the advice of health professionals. In fact, the survey we’re presently running tells us that of the self-selected population who have responded, the Internet is the single most important source of information.
Balens' Forum moves big health data project forward
Last Sunday, I had the pleasure of co-hosting the Balens' Forum at the Holistic Health Show at the NEC in Birmingham together with David Balen, Managing Director and spearhead of Balens, a leading specialist Insurance Brokers for Health and Wellbeing Professionals and Organisations in the UK.
This year, we were able to showcase during the course of a very full day the progress that we’d made with the group of collaborating UK academics.
But we are increasingly broadening our academic base, bringing in academics and health professionals both from the USA and others parts of Europe.
Where we’re going with the project
It’s too early to give details of the project. But the essence is that we’re planning to develop a citizen-owned health data cooperative that allows individuals to use enter key bits of data about how they feel at regular intervals to capture trends in their health. There is a big movement towards grassroots based data that empowers people and that is owned and controlled by the people. It’s at odds with the long-standing model of top-down control of health data by medical and scientific professionals that have typically done little to empower or engage people.
Part of the process will be to also characterise certain elements of the ‘healthcare system’ to which an individual is exposed. Detailed information won’t be part of the package, as the goal is to have a very large number of people enter a little bit of key data, rather than have a lot of data from many people (something that’s more often done, even if the data isn’t always as reliable as it might be).
People who join the cooperative will be asked if they wish to contribute their data anonymously so that it can be analysed and relevant trends fed back to them so that it might influence their choices or behaviours. We, the scientists and doctors involved with the design of the system, so act merely as facilitators to the health data cooperative and the members.
Presently we’re in the process of agreeing parameters, building the collaboration and considering various options for the multiple data capture systems needed. We are intending before the year is out to launch a pilot trial.
We’d like to hear from you
If you are an academic at an institute or university and are interested in health research, especially as it relates to nutrition, lifestyle or non-drug or surgery based modalities, we’d love to hear from you.
Please email us at [email protected] with your expression of interest, including a short biography and reasons for your interest.
We’re looking for broad collaboration on our scientific panel and we’re looking for collaborators who are committed to the cause and might initially donate their time to allow us to get the pilot trial off the ground. Fortunately we have already secured funding to do the tech part of the project, at least for the pilot. Assuming a successful pretrial, we will be applying for more substantial funding to help better support the facilitators on the project.
In the meantime, keep engaging with and fine-tuning your own super-healthcare system…