It’s personal: navigating research questions that stem from our lived experiences

In June 2023 we held a panel discussion at the Society for Epidemiology Research Conference in Portland, Oregon, to discuss the unique aspects of investigating research questions that stem from our lived experiences. Our objective was to address how to navigate professionally investigating a problem that has affected our own health or the health of a loved one. We further set out to discuss what compels us and what obstacles we face when conducting such work. The COVID-19 pandemic showed that all population-based research is personal, as it affects the people in our communities. Yet what distinguished this panel was that the health problems we encountered were less common, understudied, and therefore left us feeling compelled to seek answers, sometimes feeling isolated in our pursuit. The experiences of our panel of researchers varied, but some common themes emerged. Whereas positionality and reflexivity statements are increasingly common in qualitative research publications, in the medical and health sciences we often make no comment on our personal lives, including in our research publications. We seem to believe this adds to our objectivity and that the only place designated for describing our influences in peer-reviewed journals is the ‘competing interest’ or ‘conflict of interest’ statement. Sometimes the more value-free term ‘disclosure’ is used.1 However, the underlying objective of such statements is to identify circumstances which could potentially indicate bias. This unfairly portrays personal experiences as clouding our research approaches, rather than contributing insight and knowledge, including making us care deeply about the topic and even improving the methodological rigour of our work.2 Qualitative researchers consider reflexivity an integral part of the research process.3 Reflexivity refers to self-reflection about how our world view shapes our research at each stage of the research process.4 Reflexivity differs from self-reflection alone, in that it is more rigorous and occurs early in the research process,4 allowing researchers to transform the research study in response to their reflections. Reflexivity statements can be made explicitly in the manuscript, or they can be a personal part of the research process, such as keeping a journal to reflect on issues related to the research.4 Reflexive questions include ‘'how do my world view and experience shape my choice of research question, the methods I have chosen, the way I have conducted my research and how I share my research?’ (Jamieson et al. provide other examples.)4 Reflexivity can include a researcher’s reflections on their positionality, which refers to how a researcher’s position in society, influenced by factors like gender, ethnic identity, socioeconomic position and political alignments (e.g. to feminism or social change), influence their research.3 The premise of incorporating a reflexive practice is that the choice of the research question, the conduct of all studies and the interpretation of data are not objective but can be swayed by pre-conceived opinions. Some quantitative researchers have advocated for pre-registration or publication of study protocols, which ensures that study questions, primary outcomes, exposure definitions and other methods are stated upfront and not tweaked to obtain one’s desired results.5 Scholarship that critically investigates the researcher’s role stems from queer, feminist, ethnic minority and other marginalized group researchers, often because their personal and professional experiences challenge conventional academic and scientific knowledge.2 Historically, gay and lesbian research was done by heterosexuals following a disease discourse that pathologized and stigmatized lesbian and gay individuals.6 Feminist scholars believe that issues important in their own lives, including caretaking, women’s sexual health and sexual assault, were worthy of research, thereby breaking down the divide between the researcher and those being researched.7 An ethical imperative and a human rights perspective drive the need to include ‘people with lived experience expertise’ in research which evaluates policies that affect them or medical treatments they receive.8–10 Activists from the disability, HIV/AIDS and Indigenous rights movements led the way in demanding community and public involvement in research involving marginalized populations through the ‘nothing about us without us’ paradigm.11,12 Disability rights activists wanted influence over research that affected their lives.11,13 Similarly, AIDS activists did not want to be portrayed as victims, and Indigenous people wanted solutions rather than having their communities pathologized.12,14 Personal experiences can provide insight about a topic by providing intimate and repeated observations of an issue. For instance, people with lived experiences gain knowledge and insight due to direct observations of their lives and they may see patterns that scientists miss. Lived experience can be a powerful form of immersive study. The British Medical Journal (BMJ) has provided notable leadership in requiring a statement as to how input and advice from people with ‘relevant expertise in living with the condition or situations authors are writing about’ were obtained in each publication.15 They use the word ‘patient’ to include people who may not describe themselves this way, such as pregnant individuals, parents and caregivers, people who use a particular service or those affected by recommendations.15 Patient and public involvement is said to improve the ‘quality, relevance and uptake of research’.16 The involvement of patients enriches research from the very beginning, by defining the research question of interest.16 Often the primary concern of patients and other people with lived experiences is that the research questions and outcomes are those that matter most to themselves and their communities.16–18 The choice of research question in turn affects the choice of study outcomes and exposures, the study design and analysis plan and the interpretation of results. In this way, involvement of those with lived experiences can profoundly transform and improve the methodological rigour of a study. Many funding agencies now require patient and public participation in research studies. The Canadian Institutes of Health Research has initiated a strategy for ‘Patient-Oriented Research’, which includes targeted funding for and guidance on the inclusion of public input in research studies.19–21 What happens when the researcher leading the study is the ‘patient’ or otherwise affected by the condition or situation being studied? Some literature describes physicians researching their own illness, often becoming disappointed with the state of research.22 But what about for those of us whose profession is research? That is, our profession involves formulating research questions, collecting and analysing data and investigating hypotheses to generate insight and knowledge on a topic. The social sciences use the term ‘insider’ (vs ‘outsider’) to describe when the researcher belongs to the group they are studying based on a shared ethnicity, sexual identity and gender.2,6,23–25 It can also be used to describe when the researcher shares with study participants some lived experience.7,26–29 Insider-outsider status is not dichotomous as there is a diversity of experiences among ‘insiders’, and each person has multiple social identities; insider status may also change over time.23 Research by a ‘person with lived experience’ has distinct challenges and benefits. There is no standard way in peer-reviewed publications to disclose our personal experiences with the research. There is the patient involvement section in journals such as the BMJ, yet this does not specify when the researchers themselves are directly implicated in the research topic. With no acceptable platform for disclosure, it remains unclear whether we should disclose at all. Researchers may worry that they would be perceived as less objective and therefore less competent to address the research question. However, the view that outsiders are more objective is misguided and stemmed from a problematic colonial approach that privileged persons of Europeans ancestry’s perspectives when studying other cultures.25 In fact, some of us have felt that researchers without lived experience come across as crass and impersonal. Panel members agreed that a lack of personal experience can sometimes allow colleagues to address highly sensitive topics with a sense of detachment. It can feel mean and cruel when colleagues, heralded as ‘experts’ on their topic of study, do not see the full humanity of their research subjects or miss important nuances and details, particularly when you or your family are the subjects of research. In fact, the term research ‘participant’ is preferred to ‘subject’, because the research community has long valued the importance of active participation of those with lived experiences in the research process.30 Research that does not incorporate the voices of those with lived experiences can be misinformed, voyeuristic, exploitative, sensationalistic and simply inaccurate.24 In addition, this inaccurate and damaging research can have ‘trickle-down effects into public discourse, medical practices, and government policies’.24 In a recent experience in this co-author group, a researcher self-disclosed their relationship to the outcome analysed in a peer-reviewed publication, and added the context of that relationship to the paper. They were told by this prestigious medical journal that such self-identification was inappropriate for the ‘journal style’. Another research group was told that as a requirement of publication, personal information (in their case identifying as lesbians studying lesbians) was deemed by the editor as ‘irrelevant’ to the research.25 Although journals are of course free to set their styles, it does not seem in keeping with the spirit of valuing lived experience to delete the authors’ own lived experience from journal articles. Ideally self-disclosure would be optional. as forced disclosures may ‘out’ researchers and subject them to scrutiny.4 Sharing personal information should be optional because this maintains the privacy of the researcher themselves, but also in certain situations that of children, friends or family members. Why do we even feel compelled to disclose our lived experience? Disclosure ensures transparency and honesty about the research process,25 key features of good research. The personal experience may have shaped our research interest, approach and interpretations. It may be the reason we sought to understand those who share similar experiences and why we are invested in the research. It may be a way to overcome prejudice or misconceptions about a certain topic or population.2,24 Beyond this, feminist scholars have pointed out that disclosure gives voice and power to the researcher.25 Amidst often sterile and detached academic writing, the personal disclosure shows the human side of the research process. The disclosure shows the humanity and curiosity of the researcher, and it may be a way of connecting with others with lived experiences, of breaking down the hierarchy between researchers and the researched, saying ‘I’m not just studying you, I’m one of you’. Those with lived experiences have described feeling researchers with lived experiences are more credible, more trustworthy and more likely to have good intentions and be accountable to study participants and their larger communities.7,24 Disclosing lived experiences from the recruitment and interview stage can encourage study enrolment, create an interview environment that is more comfortable and safe and help develop trust, rapport and accountability between researchers and researched communities.24 Having insight and passion about a topic does not in itself guarantee that the resulting work will be scientifically rigorous and accurate. Our duty as scientists remains: to conduct research that is methodologically sound, to be sceptical of any claim, to look for evidence and seek conflicting evidence and to question our own presumptions. Critics may feel those involved in advocacy for a certain issue, particularly if it personally affects them, would go to any lengths to convince society that their area of interest should be prioritized or funded, including falsifying data. A famous example was exaggerating the prevalence of homelessness to obtain increased funding.31 As scientists we want our studies to portray the truth as well as possible, acknowledging that knowledge about certain issues is still nascent. In addition, there are different perspectives and viewpoints. As insider researchers, we have a duty to prioritize research questions that reflect the full spectrum of lived experiences. We must be careful not to let our own experiences blind us to other perspectives.2,6 This is why as researchers with lived experiences, it is still important, and arguably essential, for us also to involve others with lived experiences in our studies and obtain their perspectives. It may be challenging to involve populations not able to speak for themselves (e.g. intellectually or developmentally disabled, children). In such situations, researchers must do their best by consulting with community members in similar circumstances and adopting approaches that maintain the dignity and humanity of those being researched (e.g. adopting the social model of disability32). Some have suggested researchers with lived experiences can immerse themselves in the community to ‘expand their own standpoint on the topic’.24 Other issues include that insider researchers may have trouble communicating the research findings with outsiders because they know the topic intimately.29 Working in insider-outsider teams can help bring additional clarity to the interpretation of study findings.24 Our relationships with community members strengthen us but also come with an emotional toll. Qualitative researchers have described sometimes feeling triggered by interviews where participants share ‘deeply personal and often painful life histories’.2 For quantitative researchers, the research process may trigger emotional personal memories, although there is often less direct contact with the people being researched. Researchers have identified several tools to overcome such challenges. Some have found it useful to work in supportive insider-outsider teams and debrief with colleagues to deal with the emotional aspects of the work, or have colleagues take over when it becomes too difficult.26 Other researchers have found it useful to seek out professional counselling. A certain psychological distance may be required to appropriately research a topic or write about it,2 and this aspect of personal research itself can be of therapeutic value to the researcher with lived experience. As people with lived experiences, some panel members described the advantages of connecting with community members to feel a sense of belonging and empathy, and to learn from others with similar experiences. Conducting research is, after all, only one part of our lives. For some of us, connecting with others through in-person and remote support groups has been critical to overcoming periods of isolation, distress and sadness related to our lived experiences; yet it often came with an emotional toll. Sharing our collective experience of an illness or circumstance can be life altering. However, communities of support among individuals experiencing certain health conditions or life circumstances can mean sharing in the experiences of loss and trauma, or experiencing grief and loss when group members or their families die from their illness. Others have pointed out that community members may be disappointed in us when we involve them in research studies, because they may expect research results faster that is realistically possible.26 One co-author (M.D.) coined the termed the ‘Bento box’ researcher to describe the fact that adding her personal experience with disease to her existing research programme means expanding into a new area. Some of us have experienced a personal health event in our specific area of research, but others have changed from an area of specialized research to focus on an entirely different one. For some of us, this process of becoming generalists versus specialists was key to addressing personal questions where expertise had to come after identifying the important research question. We will likely not have total expertise in important research questions. We have dealt with the problems of being generalists by seeking out expert collaborators, working as a team with people of a variety of specializations, and working to gain the expertise necessary to answer questions that matter. There are logistical difficulties in beginning a research programme into questions of personal interest; some of us did so at more established periods in our careers, and some were years into research on a topic and then became personally affected by it. A more senior position and funding support, as well as training in research methods, facilitated pursuing our areas of personal interest. Launching new projects, particularly for those of us moving to new substantive areas, was particularly difficult. Interestingly, we have all been successful in grant applications on topics of personal relevance. Grant funders increasingly require that patient involvement and engagement is a component of the grant application, and being personally affected can facilitate this process. In addition, lived experiences also provide us with a certain determination to persist in the difficult and often frustrating experience of applying for scarce, competitive grant funding. Also, lived experience provides us with the ability to ask more meaningful questions and to understand nuances in the topic, and in this way to create a better-quality proposal.33,34 Some cancer researcher colleagues have suggested giving specific grants to trainees with cancers who wish to study some aspect of their own illness. This type of model would be useful for trainees pursuing personal research and it would help if scholarships took lived experiences into consideration. Research that is of a personal nature is a distinct form of enquiry with its own unique features. Lived experiences can improve the quality and relevance of our research. Concern that researchers conducting personal research are less objective can impede honest discussion about its benefits and challenges. What we found most positive about our experience was being interested in the topic, knowing it is important, and the findings being directly relevant to our lives or those of loved ones. Ways to cope with challenges include reflexivity practices and using insider-outsider teams. It can be difficult to do this kind of research when it feels like no one else is doing it, no one else understands it and there is no support to undertake it. Perhaps more researchers coming forward about leading personal research questions can facilitate discussions about addressing common problems. Attempting to research a topic of personal relevance is a worthwhile pursuit and will hopefully lead to new insight and some much-needed solutions to the problems we face. In addition, we hope there is a shift among journals and funders to give the lived experience of researchers some recognition, including designating a space to describe lived experiences for researchers who choose to do so. A.M. and N.A. first conceived of the and all authors to the themes and A.M. the first and all authors the for important authors the A.M. has research topics of personal including those related to and after the of her N.A. was to research the of in Canadian after her experience of care as a experienced loss which then shaped her research on and from her lived experience to research the outcomes and in particularly tools were used in the writing or of this paper. We the Society for Epidemiology Research for the to the research questions that stem from our lived which the We are to at for her guidance on the social sciences literature and for her expertise to help the We of the Journal of Epidemiology for their and

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