Public and patient involvement at NICE: why does this matter?

Jeff Waite interviews Leela Barham

Independent health economist

The National Institute for Health and Clinical Excellence (NICE) is the arms-length National Health Service (NHS) agency that provides recommendations to the NHS in England and Wales on clinical practice and technologies that should or should not be used in the NHS. NICE aims to ensure that both the public and patients are included in their work and deliberations that lead to recommendations.

Jeff Waite, on behalf of pharmaphorum, caught up with health economist Leela Barham, to discuss not only the ways in which the public and patients can engage with NICE, but why such discussions are in fact pivotal to an effective use of finite financial resources. Having extensively reviewed relevant literature, and the NICE website, Leela discusses both formal and informal mechanisms that provide an opportunity for the public and patients to be involved.

Here, Leela identifies the salient health technology assessment decision-making process and numerous areas in which improvements in transparency would help NICE achieve its mandate. She highlights concrete steps that should be explored to further improve the way public and patients views are involved in shaping health care policy. Lessons from the NICE experience are likely to be relevant to other countries that have or are adopting health technology assessment.

Interview summary

JW: Why did you take on this project?

LB: Health economics is just one part of the relevant analysis of health care decision making and sometimes I worry that this is forgotten in the battle for a more precise estimate of the cost per QALY. One Chief Executive of a Patient Organisation once said to me that in NICE appraisals he felt like it was “the company’s health economists versus the academic health economists and the patient just an afterthought”.

I take a keen interest in how decisions are made in the NHS, in England but also in other parts of the UK and Europe, and it seemed to me that whilst there was a great deal of analysis of NICE and its decision making there was an opportunity to look at how well it really involved and engaged those who arguably are most affected by NICE recommendations, the patients who may or may not get access to a new medicine, and the public who should be concerned about how decisions are made not just when they are ill and are patients, but for when they might get ill or their friends or family.

"I think it’s always been important to involve and engage with patients and public when thinking how best to spend limited tax receipts, after all it is the public’s money."

JW: Why is patient and public involvement important for improved HTA decision-making?

LB: I think it’s always been important to involve and engage with patients and public when thinking how best to spend limited tax receipts, after all it is the public’s money. But the wider financial pressures are likely to mean that there is an even greater need to involve and engage, unpopular decisions may be a little more palatable if patients and the public have had access to the information (which may make clearer to them the nature of opportunity costs and trade-offs) and helped to make the decision (which means that they can influence what priorities are and correspondingly what may not be a priority).

HTA is a multi-disciplinary approach and alongside the health economists and the clinicians there should be room for others, ethicists, patients, the public and companies. For me, this means HTA is closer to the political reality of decision making, and in an increasingly networked and media savvy world if you don’t involve and engage patients and the public in the HTA then you can be sure that they will get involved and engaged when there is no or limited access to a new medicine that may have resulted from the HTA, you need only to look at the media for proof of that. But that said it’s not easy, it takes education for patients and the public to be able to get involved and engaged and of course it takes time. But my view is that this is worth it and I can’t see the trend reversing.

JW: What was your most surprising finding?

LB: I was surprised that NICE had spent quite so much time in developing their approach and proactively reaching out to patients and the public. Their workload is clearly challenging, and that I think is why some of their evaluation work has not been published, which is a missed opportunity to demonstrate their work but also limits transparency, the more cynical might wonder why an evaluation didn’t make it into the public domain, was there something that NICE didn’t like in there?

JW: Which of your suggestions should be implemented immediately?

LB: I think that what I have suggested, in particular, to make it clear who is representing patients in both Appraisal Committees (Committees which include a variety of stakeholders including lay representatives and who form recommendations on use or restrictions on use of new medicines) and the Citizen’s Council (a group of 30 members of the general public who debate questions set by NICE) are all simple. That’s just a matter of taking information that NICE must have and putting it on the web, and it’s just good governance. Even as part of doing this work, and by approaching NICE in order to give NICE the opportunity to clarify and fact check, led to change, they now list who is on the Citizen’s Council. So that goes to show that it can be achieved.

"…if you don’t involve and engage patients and the public in the HTA then you can be sure that they will get involved and engaged when there is no or limited access to a new medicine…"

The other areas I suggest are more challenging but nevertheless vital, ensuring a full complement of members of the Partners Council (a group of partners in the health care system such as Royal Colleges but also public and patient representatives) means that these Partners take their role and responsibility seriously. It’s not really clear how far not having a full complement is really a NICE ‘problem’ or not but it’s a signal of how well that two way process is working. So it’s worth NICE taking a look and if Partners are not attending the meetings then they should urge them to do so in the future or the space will be offered to others.

The final suggestion, of more evaluation, is a usual recommendation of researchers but it seems to me that there is a need to consider just what the significant time (and resource) being spent on public and patient involvement is delivering and we can only do that if we evaluate. And those evaluations can be NICE funded, or they may be funded by others, such as patient organizations themselves. Not least publishing the 2008 NICE funded evaluation would be a simple step.

Not doing these would mean that NICE is not living up to its own principles of patient, carer and public involvement. They include reviewing its own progress. Given the high profile of NICE, not just in the UK but also as a gold standard for HTA as highlighted by the World Health Organisation, means NICE has to demonstrate how it meets its own standards. I try not to use too many clichéd phrases, but NICE needs to ‘walk the walk, and not just talk the talk’.

And if we can show that it works, that it means better decisions, then NICE can show other agencies that it’s worth it too. And that could mean a sea change in other countries and their approaches to HTA, it could very well mean that tokenistic involvement moves to real involvement and engagement. I still remember a meeting with a German health economist who said to me “patients don’t really matter when it comes to pricing and reimbursement”, and that seems a missed opportunity to me because it’s for the patients (and would be patients) that we should all be concerned about really.

About the interviewee:

Leela works on a variety of issues including competition in the health care system, health at work, health care system regulation, patient access schemes (PAS), policy on Health Technology Assessment (HTA) and value based pricing (VBP). Her work on health and social issues has been published in peer reviewed journals including: The Patient, Pharmacoeconomics, Nursing Standard, Sexually Transmitted Infections, The Howard Journal of Criminal Justice and Policing and Society.

Leela also does freelance writing, publishing in the IMS Health publication Pharma Pricing and Reimbursement, PharmaTimes and EyeforPharma. She previously worked for NERA Economic Consulting working for a variety of both public and private sector clients.

Jeff Waite is Director of Knowledge Management at Stelerix. He can be contacted here.

Should the public be involved in HTA decision making?