Over the years I have been regularly approached by people with dementia, their carers or people affiliated with them, to know how they can get involved in research. It highlights that many people are keen to help research but do not know how to get involved and make this happen. Time to change that.
In this blog entry, I will set out a framework on how one can get involved in research as a lay person. I will also provide some links to different initiatives which facilitate the involvement of lay people in research.
In the past, research was mostly confined to the universities or R&D laboratories of industry with little or no involvement of the public in either deciding what was researched or influencing the actual research. This might be not a problem for some research but for medical and health-related research it was increasingly recognised that closer involvement of lay people, including patients and carers, would create better outcomes for patients and their carers. Around 10-15 years ago, several initiatives started, therefore, to involve more patients, carers and lay people in research. (Note: I am aware that the term ‘patient’ is seen a derogative to many people with dementia, however, I am talking here about any person affected by disease and the research involvement of people with a disease is referred to as the ‘patient involvement’. Hence, I am using the patient terminology to remain consistent with the existing patient involvement initiatives for research.)
Of course, many patients were already part of research but as mere passive ‘subjects’ of the research, which clearly was not good enough. Instead, it was realised that having patients as ‘participants’ in the research, by being more active agents in the science process had considerable benefits for everyone. On the one hand, it allows researchers to get a much better insight into the actual problems patients and their carers faced, which in turn influences their future research direction. On the other hand, it allows lay people to become empowered by actively influencing the research agenda while getting at the same time an insight into the complexities of the research process. These days, it is – at least in the UK – very rare to have medical or health research which does not include lay people, including patients and carers, in any research projects. Indeed, some medical and health funders make it now obligatory to have some input from lay people in the proposed research projects. For example, all our research projects investigating outcomes for people with dementia and their carers involve those people in different parts of the research process.
So, what parts of the research process can we get involved in as lay people?
There are three main parts of research to involved in 1) Before the research starts; 2) During the research, and 3) After the research. Let’s go through each of them to explore how we can get involved in the different parts of the study.
Before the research starts
Many people might not be aware that lay people can get involved even before any research happens. It is possible to get involved on 3 different levels before research starts.
Setting research priorities
This first level involves patients, carers and lay people to shape the research priorities in discussion with researchers and clinicians. This is a very powerful way of shaping any future research for any disease. The reason why it is so powerful is that these research priorities are often picked up governments or research funders to set their research priorities for their funding calls. This means that if we take part in this part of patient involvement for research, we can make a big difference for any future studies in the field.
In the UK the independent James Lind Alliance (https://www.jla.nihr.ac.uk/) and in the US the Patient-Centered Outcomes Research Institute (PCORI – https://www.pcori.org/) are two leading institutions worldwide which are important in setting research priorities for many diseases, including dementia. Both have regular calls or openings for patients, carers and lay people to take part in sessions to set research priorities. It is, therefore, worthwhile to check on the newsletters of those institutions, if one wants to take part in research priority setting.
Leading and designing research
The next way to get involved in research before it starts requires lay people to get involved in specific research studies or projects. In particular, most research studies are keen to know whether the research they are planning or applying for funding for is relevant to people with that disease, their carers or families. This relevance of the research is often referred to by researchers as “patient-related outcome measure (PROM)”. For example, will the outcomes of the research project be relevant to patients and carers or are any aspects missing which should be included. Other research projects ask patients, carers or lay people to ‘co-produce’ the research with them, this means the patients, carers and lay people not only feedback on the proposed research but co-design/produce the actual research project with them. This usually means a prolonged involvement with a particular research group as designing, funding and setting up research projects takes a long time. But it can be a very rewarding experience and creates true co-ownership of the research conducted.
Improving access to clinical trials
If you have been following my blog for a while, you will know that I am a big proponent of clinical trials, as they produce the best scientific evidence for new treatments. When people hear clinical trial, they often assume this only encompasses pharmaceutical/drug trials. Certainly, a large number of clinical trials are drug trials but there are also many clinical trials which do not test drugs but non-pharmacological treatments, ranging from nutrition, to care practices, to technology use, to carer education and so on. There are literally myriad ways to conduct a clinical trial and particularly involvement of patients in non-pharmacological treatments has become increasingly recognised as being pivotal for the success of the research.
Despite clinical trials being so powerful, research has shown that only a very small minority of patients, carers and their families take part in such trials. The main reason is that the majority of the people are simply not even aware that a clinical trial for their condition might be ongoing and they might be eligible for participation in the trial. For example, only 5% of all cancer patients take part in clinical trials, which is an astonishingly small number for one of the major diseases in our society. The number is likely even lower for dementia, although I could not find a number for clinical trial inclusion for dementia. A critical factor of people being invited for clinical trials is that their treating clinician is research active and knows about ongoing clinical trials. The clinician is therefore often a gatekeeper for clinical trial access, which is clearly problematic as it hinders people to take part in clinical trials. Once this ‘gatekeeper issue’ was recognised, researchers started to create registries for clinical trials to allow lay people to search and find themselves clinical trials they might be eligible for. It is, therefore, now the patient who can find themself the clinical trial and sign up for it. Spreading this information is critical so that more people have access to clinical trials. Website such as https://clinicaltrials.gov/, allows searching for clinical trials anywhere in the world. The key is to make more people aware that they have a right of access to clinical trials and where to find this information.
During the research
The next part for research involvement is the well-known way of being a participant in research. This means that we are active participants in a research study/project. I cannot stress enough how vital research participants are for research and how grateful we are for people to give us their time for taking part in our research. Human research would simply not possible without our participants and hence having people willing to undergo a research protocol is critical to make the research a success – regardless of its outcome.
Access to research studies has considerably improved over the years and there are now many initiatives which advertise research studies widely to patients, carers and anyone interested in taking part in research. For example, the Join Dementia Research Initiative (https://www.joindementiaresearch.nihr.ac.uk/) in the UK, allows any person to sign up for being contacted for dementia research studies or to search for existing research studies. What an incredible source which gives lay people access to research they might not have been aware of, even though it might happen in close proximity to them.
Speaking of which, even if we do not have access to such databases, we can get involved in research. For example, we could do an internet search as to whether any universities/research institutes nearby are conducting research into our disease or the research area we are interested in. If so, we can simply email some of the researchers advertised on university/institute websites and ask if they have any opportunities for patient involvement or research participation. You will be surprised how keen researchers will be on taking up your offer!
A final aspect during the research which lay people can help with is to provide feedback for the researchers on their study. I do not mean here patient-related outcomes but more the overall research experience, such as what was good and not so good about the research study. Was the research protocol too long, too short, too difficult to understand and so on? This feedback information is vital for researchers to improve their future studies in this field and often the feedback information becomes its own outcome measure from the research, as it provides such important feedback for future research.
After the research
After the research, lay people can play a critical role in informing participants of the outcome of the study as well as the wider dissemination of the study’s results.
It is now more common that participants are informed of the outcomes of the studies they took part, although there is so far no systematic requirement for research to provide such feedback. Feedback from participants has shown that the overwhelming majority wants to know the outcome of the study they took part in, which is perfectly understandable since they gave their time to participate in the study. Lay people can help with this dissemination by asking for the results when taking part, they can also offer to help to formulate the results which are fed back to participants. Having a lay person providing input on these result letters can help clarify the outcomes for the study. For example, participants are often very disappointed when a research study shows a ‘null result’ meaning that the outcomes did not show a statistically significant difference. They often ask themselves or us then, ‘Was the study and my participation all for nothing then?’ Quite on the contrary, ‘null results’ are – in my opinion – often very important as they tell us that we researchers do not understand the underlying science properly and make researchers think much harder, resulting in better results in the future. Regardless of the statistical outcome, it is, therefore, important to clarify to participants that any study provides new scientific information, which is useful for the advancement of knowledge. They contributed therefore to the advancement of scientific knowledge, which is definitely worthwhile.
Similarly, lay people can get involved in the wider dissemination of study findings, by contributing to the write-up of the results for a scientific publication or communication of the results to charities, governments or patient advocate groups. I had recently a great comment by one of my Twitter followers, asking why scientific articles do not have ‘lay abstracts’ – abstracts written in a lay language. Good question, I thought, in particular as researchers write already lay abstracts for their funding applications but the same – yet – does not apply to scientific articles. This example, highlights again how important lay people input is even after the research has happened.
Taken together, there are many ways to get involved in research in research and I hope some of you will take this opportunity up. Many research studies are also happening these days online, which further lowers the barriers in taking part, as we can often taking part from our living room.
If you are interested in taking part in our own research please feel free to contact me directly, as we have always some ongoing studies we would love to involve you. But there are of course many other groups and studies out there and I suggest you have a look at the links below, which will give you more information on patient involvement and research studies. Most links are for the UK, US and continental Europe as I am not aware of other patient involvement initiatives, so if you know of similar initiatives in your country please get in touch and I am happy to list them in the below links.
Let’s get researching!