The ENABLE repository of medication adherence technologies: the story so far
Reflections on the official launch of the ENABLE repository
The challenge
Why do we take medication? To keep ourselves in good health, to help ease our symptoms, to prevent or slow down impairment … In essence, so that we can continue living our lives in the best way possible given the circumstances in which life takes us, whatever these may be.
Would we get what we are hoping for, from taking medication? If the prescription is based on scientific evidence and adapted to our situation, we stand good chances of getting the expected benefits. If, and this can be a big ‘IF’, we manage to take medication at the right time and in the right dose. Because taking medication is often not an easy task. For medication users, finding ways to stay on track with their medication regimen, also known as ‘medication adherence’, can be a big challenge.
The good news is that nowadays, not only “there is an app for this”, but there are many technologies in different stages of development for different health conditions, types of medication and use scenarios. Devices that measure how the medication has been administered, apps that give feedback on recent medication intake and reminders, information, advice, motivational support on how to keep on track every day. Platforms that facilitate communication between patients, caregivers, family, healthcare professionals to address any medication-related problems and manage together the health problems that patients are confronted with. But where can we find all these technologies and how do we choose one for our situation?
Some patients are fortunate to receive care in settings that have developed or work with medication adherence technologies adapted for their particular situation. Others might come across a fitting solution through their own network of acquaintances or by searching online. But the wide majority of patients don’t know these technologies exist. This also applies to healthcare professionals. Taking time individually to search for technologies, assess their fit to your own professional or personal situation, testing them, and selecting one technology to implement is not something that a patient or healthcare professional have time for, and nor should they. Without a system that facilitates access, this can quickly resemble the search for a needle in a haystack: spending lots of time that can be better spent elsewhere, with low chances of finding a suitable solution.
This lack of access and adoption in practice is a loss of opportunity also for technology developers. To develop a technology and get it ready for use on a larger scale requires a big investment of time, money and above all, human intelligence, creativity, and motivation. Seeing it benefiting real people and making a difference in their lives is among the most important motivators of putting in all the work and overcoming the many challenges on this journey. As a developer, you want your technology to be used by the type of people you developed it for, and make sure they use it safely and effectively to get the most of it.
But what would it take for medication users and medication adherence technologies to find each other?
The solution
Imagine a situation in which, as a patient, carer, healthcare professional, health manager, policy maker or other interested person, you would be able to search online for a technology to help you stay on track with your medication regimen and find something that suits you, in a reasonable amount of time and without much hassle… But, aren’t we already there?… you might say. Can’t I just use any search engine online and look at the first hits on the list? Unfortunately the answer at present, that is, summer 2024, is no – an online search is more likely to lead you to a labyrinthic experience that will result in more confusion about what is available, what is ready to use, in which context, for what types of people and whether any of the technologies are applicable to you. You might download one or two apps, access a few websites, look at interesting videos about success stories in different settings, and end up nowhere when your search time is up.
What would it take to transform this experience into a smooth and rewarding search for medication adherence technologies? The ENABLE COST Action has made some important progress in the last 4 years towards realizing this vision.
First, bringing people together to discuss the challenges and solutions related to this particular topic. Medication adherence technologies are of interest to many types of people and organizations, and they do come together to discuss this in their usual meetings. You may find a special session on this topic in an international congress of an academic society dedicated to a specific clinical area, a specific healthcare profession, or a broader topic like integrated care, chronic care, health informatics, health communication, drug utilisation. Or there may be local initiatives with a more diverse audience but with a narrow geographical focus. Each may ask different questions about, for example, the clinical, technological, psychosocial, economic, or regulatory aspects of ‘keeping on track with one’s medication’. But these types of events don’t involve sufficient time and sufficiently diverse perspectives to result in significant advancements at a larger scale. For this, people from all these groups and different countries would need to gather around some medium- and long-term goals that would address medication adherence from different perspectives. This has been one of the achievements of ENABLE so far – we now have a large group of stakeholders from 40 countries who share not only the same interest, but also a series of common experiences that link closely with their professional ambitions and journeys around a common vision (https://doi.org/10.3389/fphar.2021.748702).
Second, building a common terminology for describing medication adherence technologies. In all the sessions mentioned above, we talk about adherence in different ways. Some of us are at ease with the clinical terms and how they are used in daily practice, some with the research methodologies, some with the behavioral aspects, some with the technological requirements or business models of developing, testing and adopting technologies in health systems. But to understand each other we need to at least be familiar with each other’s ways of describing and thinking about this common reality – terms, definitions, basic knowledge of each discipline – and use the terms in similar ways. Healthcare has relied on shared standardized terms for millennia, and some notable examples in use at present are the Systematised Nomenclature of Medicine, Clinical Terms (SNOMED-CT), the WHO Family of International Classifications (e.g. International Classification of Disease, International Classification of Functioning, Disability and Health) and the National Cancer Institute Thesaurus. None of these established terminologies are sufficiently broad to describe medication adherence technologies so that we can make progress on all fronts. Another notable achievement of ENABLE was to initiate a common vocabulary, by a thorough review of existing terms and conducting a consensus study amongst all stakeholders on these terms and definitions (https://doi.org/10.1136/bmjopen-2021-059674).
Third, structuring an international network of interdisciplinary groups able to pursue collaborative projects for the development and implementation of medication adherence technologies. No matter how abstract and global we can get in talking about medication adherence in our meetings and conference gatherings, healthcare systems are real and anchored geographically and temporally. We need to think globally and act locally, and in medication adherence the national or regional scale is the right level to interact with healthcare systems. Each individual patient or healthcare professional may choose the technology that works best for them, but the evaluation and adoption of a technology to support adherence usually happens at the level of health organizations or authorities acting under conditions set by national or regional laws, languages, and cultures. Already successful adoptions of technologies have taken place at this level, which facilitated access at individual level – for example, hospital departments using digital platforms for supporting patients manage their medication post-transplantation, or pharmacy networks using medication review software to support conversations about the prescribed regimens and how to follow dosing instructions. Centers of interdisciplinary expertise have been developed in some regions or countries with the vision of boosting research and implementation of technologies on this topic but were still few and far between when ENABLE started. Another achievement of ENABLE has been to encourage the development of such national or regional centers of expertise in more countries, and several teams of ENABLE members have started local collaborations in connection to other centers (https://doi.org/10.3390/pharmaceutics15030933).
Fourth, creating an online repository as the place to search for, and learn about, suitable technologies. Most of the ENABLE project timeline was dedicated to the preconditions above. Once we had an interdisciplinary group of stakeholders working on aligning their perspectives around common goals and terms and structuring their work in a multinational network, the development of a single point-of-access resource of medication adherence technologies started to become a reality. Two key ingredients were necessary: a ‘place’ online in which to add relevant technologies, and a way to involve the multinational network to search for technologies and involve them locally for an international reach. The ENABLE website was already well developed by the ENABLE communication team, in collaboration with the web developer (https://www.b1studio.ro/), but it took lots of hours of development and testing to create a dedicated area in which different users can log in and enter information about different items using elements of the common vocabulary, and which can be moderated by the administrative team from the repository development working group. The search and description of technologies has been organised following a common protocol that was adapted by each country team depending on the local context and resources. As of July 2024, we have 22 technologies included in the repository by ENABLE members from 10 countries, and more teams are currently searching for technologies to include in the repository. The process involves contacting various local and national organisations and networks, accessing scientific and lay literature describing the development of such technologies, generating a list of technologies which are then checked for eligibility and contacted to assess interest in participating in the ENABLE platform. We aim to include technologies who have already a level of evidence (equivalent to at least level 4 on the Technology Readiness Scale). We do not perform any type of evaluation of the quality of evidence but work with the technology providers to describe their product as completely as possible given available data so far. The repository does not claim to be exhaustive, as participation of eligible technologies is decided by country teams and technology providers. Feedback so far has been positive, particularly for getting an overview of the range of solutions available (for example in training healthcare professionals on the topic) and having the possibility to initiate collaborations for further development and adoption of these solutions in specific settings.
Screenshot from the ENABLE repository launch webinar – the potential of the repository from the perspectives of webinar participants.
The future
It has been a long way to where we are now. Many hours of (mostly virtual) meetings to agree on the tasks and contributions, write documents, perform searches, contact people, align expectations, fill in forms… All voluntary contributions of time and expertise from motivated and skilled professionals, each in their own fields of expertise. But there is more work ahead to realize the potential that these initial achievements have created. What remains to be done?
The repository itself has many upgrades to look forward to – on the design, search interface, description forms and displays. Involving users in a sustained and rigorous manner to get this proof of concept closer to their expectations and needs is essential and would need to be the focus of new projects, at local, national and international level. But the repository will always represent only a small component of the network that would continue to work collaboratively towards realizing the vision of helping medication users stay on track with their medication so that they benefit most of evidence-based treatments. The ENABLE network and its achievements so far need to continue and further engage its members in collaborative initiatives for training, research, implementation of medication adherence technologies in healthcare systems across Europe and globally. The concrete forms in which this will happen in the next years will depend on funding opportunities, related initiatives, priorities of the different member groups.
The momentum that has been developing in the last 4 years will for sure result in more advancements towards this vision. So stay tuned… or better, join us!