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I'm Alfonso Aguarón and I welcome you to my blog. Inspired by my own diagnosis of a Hodgkin's Lymphoma in 2008 I decided to get involved in patient advocacy.
A few years later, I keep commited to my desire of help and support patients. There's still a lot to do so, do we look for change in healthcare together? Let's go!

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Monday, July 21, 2014

HTA: good or evil?

If you reach this article you might be thinking about finding an absolute answer about the goodness or badness of HTA. I must warn you that you won’t find it. Not everything is black or white in HTA, but a grayscale. However, my personal opinion is that there’s a gap to make it look whiter.

But first of all I’d like to share the best definition of HTA I’ve found so far: “HTA is not simply a set of disciplines and methods to assess technologies. It represents instead a real philosophy of management for a healthcare system that intends to tie the decisions systematically taken to the available scientific evidence or, otherwise, to ‘transparent’ mechanisms in which all stakeholders can participate by bringing their own perspective” (Cicchetti, Marchetti, 2010).

I must say that, at least in a theoretical sense, I agree with the existence of HTA, understanding those as a way to connect science and innovation with social and economical environments and, finally, as a way to improve the decision-making processes. Coming back to the definition above, let’s define the main stakeholders: industry, payers, providers (HCPs and hospitals) and citizens. And when talking about citizens I’d like to pay special attention to patients, as well as caregivers. A survey conducted by the INAHTA titled “Involvement of consumers in the HTA activities of INAHTA members” shows that, even when consumers (I hate this word when talking about patients, I must say) have been increasingly involved in most of the HTA agencies in the last few years, there’s still a considerable gap in the attention paid to them. Also the dialogue with patients seems not to be generally established in a regular basis.

Keeping this in mind, conversation might turn evil if we talk about QALYs (Quality-adjusted life year), a measure that takes into account both the quantity and quality of life generated by healthcare interventions, which is defined as the arithmetic product of life expectancy and a measure of the quality of the remaining life-years. Numbers are cold, but they get even colder when quality of life indicators are drawn from the observation of patients. Well, patient reported outcomes are good, but not enough from my opinion. The overwhelming sense I get is that patients are not really considered as actual stakeholders, but only mere interlocutors in non-issues.

My perception is that there are two main problems are out there:

  • There’s still a considerable information gap between professional and non-professional citizens. Information is the most important issue when taking part into this dialogue, specially when we have very tight deadlines in the decision-making processes. This leads in not considering patient organisations as an actual partner.
  • Transparency is not as good as it should. Receiving feedback from submissions is tricky, as well as understanding the criteria of patient inclusion in the processes. Transparency must be also set up in the relationship between the industry and patient organisations. Industry has to respect the autonomy of the patients as an independent stakeholder.

Patients have to be aware of their potential role in providing the humanistic approach, as well as patient-evidence submissions, to the HTA decision-making. Also all agents should be included to empower the role of patients. But it is not all bad news. Some European HTA agencies as SMC serving Scotland, NICE serving England and Wales, as well as EUnetHTA, with an European approach, are supporting training activities for patient organisations. Also the AEMPS from Spain started involving patient organisations in the ITP processes (ITP stands for Reports of Therapeutics Positioning).

So my conclusion is that HTAs are needed, they are not good or evil by themselves, but they could be really improved with a greater participation of patients. After all, if there were no patients, what would be the reason for having HTA?


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