The team at Clinpal are great fans of the work that PatientsLikeMe have done. Ben and Jamie Heywood and their team have created some great well implemented technology that is showing the way that crowd sourced research monitoring can be carried out.
We have a question though – and it relates to the name – ‘Patients’. That one word makes the statement that such information collection and assessment is only for people suffering an illness. A patient. Could a similar data collection exercise to people BEFORE they become patients?
Many of you will have heard the term ‘preventative’ medicine – ‘steps taken to prevent conditions and diseases’. But possibly the use of the word ‘medicine’ in this phrase is incorrect.
Chronic illnesses such as breast cancer diagnosis rates around the world are increasing. Drug companies are rightly developing compounds to ideally cure, or at least provide relief or an improved quality of life. However, the bigger question has to be – what is triggering these cancers. Since 1974, Breast Cancer incidence in the US increases on average at 1% per year.
At one of our recent brainstorming labs, we discussed the question of whether we will see people that are familiar with an online experience such as facebook, see the value of sharing, in return for knowledge. Specifically – would they be prepared to record real world environmental factors such as diet and exercise? If a person could receive information on how they rated in comparison to others – would a person be prepared to self report this kind of information?
The outcome was broadly that we do think we might capture that information, although the duration of the engagement will deterioriate over time. For some instances, the feedback my only be expected to be provided once. In other circumstances, it might be possible to illicit reliable responses for a number of weeks. Incentives are necessary.
Incentives for Engagement
It was agreed that incentivizing the capture of data must be carefully considered. We need to be confident that the data logged is indeed true data, and not simply ‘made-up’ data to achieve the incentive.
Incentives might be in the form of ‘gamification’ – provide access to a game in return for data, or, actually have the data logged within the game.
Minimizing the data capture load is critical. Think about the typical data entry session within an EDC system. It can take 30 or so key clicks simple to access the page required to enter data.
For health outcome questionnaires presented to patients – imagine if we could present a single question to a person on a PDA device according to a pre-scheduled event. The user would only need to provide a single response at the time the event is presented to them.
The prevalence of intelligent mobile devices is an enabler here. Being asked for this sort of information while on social media and when out and about might work. Relying on a persons memory when using a desktop computer later might be less effective. We have little control over this – but we can leverage the existence of mobile engagement at an inflection point gives us statistically powerful data.
It will be exciting to see how things evolve, and the role that the Clinpal engagement platform can play.