Patient and societal collaboration is essential for high-quality health systems

The role of health technology assessments in building health systems

‘Health technology’ a broad term used to describe medicines, vaccines, medical devices (such as pacemakers), tools for diagnosis (such as X-rays, ultrasounds, blood oxygen meters and laboratory tests), assistive technologies (such as wheelchairs and hearing aids), techniques (such as robotic assistance in surgery, procedures (such as surgery) and programs (such as preventative oral iron supplementation) that solve health problems and improve the quality of people’s lives.

Health technology assessments (HTAs) are defined by a joint task group headed up by the International Network of Agencies for Health Technology Assessment (INAHTA) and Health Technology Assessment International (HTAi). HTAs involve a process where the characteristics, effects and impacts of health technologies are systematically considered with clear, detailed methods by a group of people from a variety of disciplines (experts in medicine, technology, health economics, ethics and epidemiology). This is done mostly to help people who draft policies to decide if – and how – a health technology should be included in a health system. HTAs also inform decisions on obtaining and using health technologies, repaying healthcare providers who provide such technologies to patients, and efficiently sharing scarce resources. The purpose of this process is to create a high-quality health system that works efficiently and fairly benefits all people. Therefore, the effects of these policy decisions extend beyond those for experts and policymakers: they affect patients and the societies within which they live too.

The inclusion of patient and societal voices in HTAs

Although the voices of experts in various disciplines are crucial in HTA, the voices of people with real-life experience—that is, those who will be directly affected by the health technology, the people who care for them, and broader society—also need to be included. The impact on patients is relatively easy to imagine, for instance, direct effects on their health, daily functioning, quality of life and wellbeing. However, it is important to remember that families, workplaces, and communities are also affected (e.g. impacts on caregiver burden, productivity, social acceptance and participation can be very large but are harder to determine).

There are several reasons why it is beneficial for the affected parties to participate in patient and citizen involvement (PCI) in HTA, but considering patient and societal aspects also adds value to the HTA process. Furthermore, it ensures that the outcomes of HTA deliberations are not just research products, but rather reflections of the real-world needs and challenges encountered by patients and societies. These patient and societal aspects, sometimes referred to as ‘elements of value’, can be included in several ways.

• Information from these elements can be included in HTAs either through primary data collection (e.g. interviewing patients) or as secondary data (e.g. national health surveys).
   
• Information on patient-relevant outcomes, defined by the German Institute for Quality and Efficiency in Health Care (IQEHC/IQWIG) as outcomes related to how patients feel, function or survive, should also be used to inform decision-making, thereby making sure patient voices are included.
   
• Including patients, community representatives and advocacy groups as experts in the decision-making process not only includes their voices in HTA deliberations, but also provides transparency and improves trust. This also represents collaboration, communication and consideration throughout the HTA process.

PCI becomes even more important in settings or contexts where trust in governments is low or where ‘global’ norms do not reflect reality, such as in low- and middle-income countries (LMICs). For example, the use of hair samples for checking treatment levels may be acceptable and in line with patient values in most high-income countries, but not in an LMIC, such as South Africa. Similarly, patient-relevant outcomes may differ in LMICs: eating habits may be an important way of measuring quality of life in most countries, but the interpretation of ‘eating problems’ may be experienced differently in countries where food is often scarce.

Even though information representing public voices helps policymakers understand the needs, values and preferences of the people who are meant to benefit from the technology better—while also providing insights into impacts beyond the health benefits for patients and costs for the healthcare sector—patient and societal perspectives are not always included in HTAs or are not given the same weight as clinical and economic aspects.

• A recent review of HTAs assessed how many of the 21 elements of value were considered in HTAs. The review showed that the majority only considered four values (the patient’s ability to work and participate in the economy, impacts on the patient’s family, fairness and transportation costs).
   
• A scoping review on patient-relevant outcomes found that only one-third of research articles involved patients in choosing important outcomes. Another scoping review found that the collection and use of patient-relevant information continues to be limited in LMICs.
   
• An analysis of publications on HTA patient involvement showed that the overall levels of patient involvement are increasing. However, there was limited documentation of this in LMICs and there was limited transparency around decision-making in certain LMICs.
   
• The need for decision-making to be confidential, also because confidential clinical information and costing agreements are often considered, makes full sharing of, and PCI in, HTA difficult.

Lessons learned

While research on HTAs has shown several gaps where more can be done to include patients and societies in decision-making, the reasons for these gaps may provide starting points for improving the situation.

• The fact that specific elements of value—such as the economic activity of patients, value of hope (severely ill patients may be willing to trade some survival for a chance at a ‘cure’) and the capacity of the healthcare system—are rarely included in HTAs may be due to several reasons. It has been suggested that those working in HTA may worry about the practicalities of considering such elements of value, including a lack of knowledge or resources to do so.
   
• The low level of patient involvement in deciding on outcomes in research was found to be caused by uncertainty around what is meant by—and what is considered to be— ‘patient-relevant outcomes’.
   
• The small number of research  studies on patient involvement in LMICs is partly explained by the fact that HTA research is fairly new in these settings, as well as less funding and support from governments.
   
• The requirement for confidentiality in HTA can have a negative impact on transparency and affect trust, particularly in places where distrust in government processes is high.

Key messages

Wherever it is relevant and/or possible, we need to focus on doing more to collaborate with patients and society throughout the HTA process to ensure health policies are based on the real-world experiences of people who are meant to benefit from these policies. This will result in health systems that people can feel ownership of and trust; with decisions that address their concerns and are truly reflective of their needs, preferences and values. Additionally, it will foster support among patients and the public, inspiring new research and innovative solutions, and stimulating the allocation of money to such activities.

This can be done by:

• Moving away from the appearance of inclusivity to truly including patients and societies in active participation throughout the entire HTA process. This means involving them early on through activities such as identifying their needs and unique challenges, co-designing workshops, participations in advisory groups and feedback loops, and providing narrative evidence.
   
• Increasing the training of those working in HTA on how to find, collect or produce information that represents patient and societal perspectives, while also making sure the methods for doing so are standardised.
   
• Attending virtually may make it easier for patients, community representatives and advocacy groups to be a part of deliberations, while being mindful that this may unfairly increase the participation of certain groups over others.
   
• Ensuring the issues that are considered most important for patients and society are included in decisions. More work needs to be done on standardising and evaluating definitions of ‘patient-relevant outcomes’ for specific health conditions and how these are measured. Patients should also be involved in co-creating surveys to address aspects that are important to them, such as symptom relief, long-term outcomes, quality of life, function and wellbeing. It is also important to understand the issues that make including patient-reported outcomes more difficult in LMICs and what can be done to overcome these, for example, by translating patient-reported outcome questionnaires.
   
• Formalising PCI in HTAs conducted in LMICs by systematically scanning for opportunities using tested questionnaires. Furthermore, a recent forum piece suggested engaging with patient advocacy groups in LMICs to better understand their challenges in participating in the HTA process.
   
• Addressing lack of transparency and trust in the process by developing a platform where information about HTAs can be exchanged while still maintaining confidentiality. This could enable wider knowledge communication of outcomes of HTAs and the decisions that underpin them.

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To link to this article - DOI: https://doi.org/10.70253/RDUU2560

Conflict of interest

Amanda and Debjani are both members of the World EBHC Day Steering Committee.

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The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.