We talk to PIF co-founder Mark Duman about why PIF was started, the need to understand patients on an individual level and fully integrating health information provision into health and social care delivery.
What challenges do you see ahead for health information generally and PIF in particular?
I think for both, funding is always tight. PIF doesn’t get grant or central funding. Given the caveats I mentioned earlier, would more money allow PIF to make more of an impact and, if so, how? The answer I’m pretty sure is a resounding yes. I think that's also true for patient information.
I often compare digital health to the printing press. In the same way the printing press diffused some of the hold the church had on the populace, the internet has loosened the grasp of medical paternalism on patients and the public.
As information and PubMed and access to trials has become a lot more available, I think we still need to think about ‘what is quality information?’ How do we support patients to appropriately understand that information and then use it to demand the best health services for them?
And then the 60-million-dollar question is evidence of impact. How does PIF evidence that it's making an impact? How does anyone providing information to patients evidence impact? How does the whole patient-centred movement evidence its impact?
Medicine is supposed to be evidence based, pharmaceuticals are supposed to be health technology assessed. We too, in the world of health information, need to better evidence the impact we're having on patients and their behaviours and then reduction in admissions to hospital or whatever it may be.
Of course, the theme running through all of this is how we integrate that information into health and social care provision. It needs to be a ‘must have’ mandated and properly checked by organisations like the CQC.
They need to be asking: “Were you given information? Did you feel supported in your choice? If not, why not? How can we make sure that that doesn't happen?” This needs to be checked as much as the quality of care, or access to medicines.