Dear Editor
I am delighted that the IJTAHC is focusing on the important issue of patient involvement in health technology assessment (HTA).
Over the past decade or so, there has been an increasing spotlight on the involvement of patients in health technology appraisals. Rightly so. The ultimate value proposition of any new or existing health technology can be comprehensively understood only when it is viewed through a patient lens.
Stakeholders including HTA bodies, patient organizations, advocates, and researchers around the world should be congratulated for their efforts in making patient involvement in technology appraisals a reality. HTA is better for it.
We know that patient input is highly valued by HTA bodies. It lends legitimacy and context to decision making. However, this input does not have as much influence as other “less subjective” factors such as trial data and costs. When so much of the decision making hinges on the quality of a manufacturer's evidence package and economic model along with their willingness to provide a commercial deal, we need to continue the global drive to ensure that patient involvement continues to be valued and has a material impact on decision making.
This is especially important when still so many questions about the involvement of patients in technology appraisals remain unanswered—Is it sufficiently representative? Is it sufficiently standardized? Is it sufficiently reliable? Is it sufficiently clear how it impacts on decision making? Does it give useful information about how patients value treatments?
However, perhaps the biggest question is where in the development of a health technology should patient groups be most involved?
The updated INAHTA definition of HTA represents a significant step forward in positioning HTA across the entire life cycle of a new technology, rather than just at a specific time point. This definition is important as it clearly indicates that HTA is about the evaluation of health technologies at any point in their life cycle. This means patients could and should be involved in defining research priorities and in shaping evidence development to ensure that the evidence inputs into the traditional health technology appraisal and evaluation process are fit for purpose. If we expect patients to comment on the benefits at the evaluation phase of technology, we need to ensure that the end points are meaningful to them in the first place.
Patient involvement in a technology appraisal represents a massive commitment of time and resources. This is in addition to it being a very intense experience, and for most, an emotional roller coaster. If patients and patient organizations are devoting scarce resources to being involved and fully immersed in a technology appraisal, they are not devoting these to managing their condition or another project that may be more useful and beneficial to the patients they serve and represent.
With this in mind, I hope that the global drive toward involving patients, in a meaningful way, in technology appraisals intensifies.
No conflicts of interest to declare.
Yours sincerely
Eric Low
