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 was the original impetus behind PIF?

I had the fortune of being an ex-pharmacist who had joined The King’s Fund. We were running a programme called promoting patient choice. And a fundamental part of patient choice is obviously having information to support decision-making.

As Nelson Mandela would say, it's all about education, education, education. We cannot have choice or shared decision making or personalised care planning, or all the stuff we now talk about 25 years later, without providing good information to patients, carers and beyond.

When we looked around in the mid-90s, the information that was given to patients, if they were given information at all, was often at best typed up notes from a consultant. If you asked, ‘is it evidence based, is it clearly communicated?’ they would say ‘of course it is because I’ve written it’.

With the best will in the world, medics know a lot about medicine, but not necessarily about patient experience or communication.

We began to think something needs to happen about the quality of this information.  

We made visits to various hospitals and, even where there was good quality information, the access to it was variable. There was also questionable information where its provenance was not quite clear, it was not necessarily unbiased or patient centred.

With all those caveats and information needing to be at the bedrock of choice and engaged patients we thought let’s set up a little organisation. Patient information officers from hospitals around London came together and we charged £25 a year for membership under the auspices of The King’s Fund.

From there we have grown and grown. So that’s the origins of PIF.

A fundamental part of patient choice is obviously having information to support decision-making.

How have things changed in the 25 years since PIF was formed?

Number one, I'm delighted to see PIF still going. I have seen things in America, like the Centre for Information Therapy come and go. We've seen the Information Standard come and go. We've seen NHS Choices come and go, or change into different things. 

I think one of the reasons PIF has stayed in existence is because it's funded primarily by the membership and therefore it isn't necessarily dependent upon whims or changes in policy centrally.

The fact we still exist, is due to the fact that we're driven by membership and their needs. I think that's key in terms of information provision. 

I think, among the converted, preaching to those who already get it, there's much more understanding of co-creation, of producing information with and for patients. We have the PIF TICK which has taken over from the Information Standard. 

I think within our membership, and a little bit beyond, there’s a real understanding of health literacy and personalised care. I still think, however, it's sadly still a ‘nice to’ not a ‘must have’.

We still have a medical system that is very focused on medicines, on diagnostics, on healthcare provision. Not enough is spent on investing in information and shared decision making and personalised care planning. 

The overall approach to patient empowerment is still on the periphery even though there's a lot more happening. 

From my own personal experiences over the last 25 years, and those of my family, I don't feel information provision is front and centre, that shared decision making is seen as something absolutely crucial to healthcare delivery. There is still some way to go.

As a person with diabetes (PwD), not just an ex-pharmacist and co-founder of PIF, I would like to have a discussion beyond my BMI, LDL, and HbA1C, and all that medical stuff. I would like to see a broader discussion, ‘Mark, what is your illness perception? What are your medicines, beliefs? What's your degree of health literacy, your degree of digital literacy, and what's your degree of motivation?’. 

These, what I'd call person-centred vital signs, are as important as all the medical stuff. All have validated question sets associated with them, by the way.

We need to integrate these additional vital signs into healthcare delivery an understanding of who I am and how to communicate with me, in order to allow me to take more care of my own health or indeed, those around me. 

Production values have gone up. And I think we're producing much more information. But I still don't think we've fully integrated provision into everyday health and social care delivery. 

I think within our membership, there’s a real understanding of health literacy and personalised care. I still think, however, it's sadly still a ‘nice to’ not a ‘must have’.

How have health information producers’ skills changed and what has remained essential?

I think we've seen the patient advocacy and advisory groups really grow in terms of their information provision role.

This also brings up an interesting question. We supply medics and social workers, and medicines, diagnostics and hospitals and all these other interventions on the NHS. But generally speaking, the information that we get is coming from the charitable sector. If information was truly important and integrated, we could invest in that a little bit more and not just let the third sector do it.

The third sector is really growing in skills and ability. The BMA PLG patient information awards are out there. We’ve seen a rise in the concept of patient centricity and patient partnership indexes. There's a lot more chat around patient measurement. We have the patient activation measure. We have the Friends and Family Test.

These are very useful measures in terms of concepts of bringing experience into healthcare, but it's not quite the right measure. Whatever the intervention, we should be asking patients: “Do you now feel more able to manage your own health?”

I think skills-wise, as I said earlier, we've improved our production skills. We understand co-creation, patient insight and patient experience a lot better. 

What I'm not so sure we're good enough at is the coaching side of what I'd call information delivery. We've got access and great production but do clinicians prescribe information enough? 

We had an information prescriptions initiative which came along, seemed to be successful, but then sort of died a death. We had NICE developing a whole bunch of patient decision aids, which seem to come along and then also die a death. 

It goes back to the integration – the workforce is generally not tuned to prescribing information, and if they are, how to do that, and how to measure its impact.

I think it's less about the skills of PIF members and more about the skills of the health and social workforce to prescribe and evaluate the impact of the information whose production is getting better and better.

I think the other skill I would say that's necessary is I think we need to move away from what I call flash-in-the-pan patient engagement. We need to build long-term, strategic relationships with patients and patient groups. Rather than just set up short-term, tactical advisory boards, we need to actually have standing patient boards informing health care organisations across the whole ecosystem.

A lot of digital health companies don’t seem to engage patients enough in helping co-create their own products. Then they wonder why they're not necessarily working as well as they should.

We need to build long-term, strategic relationships with patients and patient groups.

What do you think the impact of PIF has been over the past 25 years?

I love PIF. I really do. It was very difficult to move away five years ago and let it go its own way under Sue, Sophie and the team's tutelage. I can't help but think of it as my child and I still mention PIF to everybody.

I get quite excited when I read the newsletter on a weekly basis albeit I’m trying to wean myself of it. I remember being the editor and setting up PIF Aware 20-odd years ago. Every Thursday night I’d sit and prep an old-fashioned email of the top 10 items on patient information.

It would be interesting to look at the last 25 years of the newsletter and do an analysis of trends and topics discussed.  

I’d like to see PIF make a little bit more noise about itself and what it does. But I do think it’s made a difference.

The guidance on personal health records, updating the guide on children and young people, is great. The digital and health literacy report and the charter are vital – as mentioned above. These are raising the profile of really important issues.  

If we go back to my earlier point and say ‘hold on a minute, person-centred care is about understanding the person not just prescribing medicines or diagnostics or hospital stays’, then we really do need to understand the person behind the patient and the patient behind the medicine or the intervention.  

One way to do that is to talk to patients is to listen to them to understand their values and then to create and tailor information and support that helps them get the best out of healthcare.  

I still think healthcare has got a lot to learn from behaviour change and nudge theories and PIF is doing a lot of that stuff to help create better quality information amongst its membership and beyond.  

I love PIF and, even though it was time to go, I still miss it dearly.

We really do need to understand the person behind the patient and the patient behind the medicine or the intervention.

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.