Researching the long-term effects of childhood conditions needs to be done a way that is kind and retains public trust in cohort studies. PhD fellow Daniel Osborne shares his experiences and how a public and patient advisory group helped.
Cohort studies were one of the great advances of the 20th Century. There were many notable successes from the early studies and researchers continue to make numerous methodological advances. And these ultimately improve people’s health and wellbeing. Endorsement from participants is a vital component of all cohort studies and the improvements in human health that they enable. We must consider how every interaction with participants affects their crucial trusting relationship with the study.
Children’s eye disease
I came into my PhD from a clinical background. I have a steadfast mission to address the disparity in research resources committed to adult eye diseases compared to children’s. The lack of progress in children’s eye care is made clear by a 1930’s notebook I found in my clinic office. It includes a list of children they saw, their treatments and diagnoses, and, most amusingly, the “type of child”. I don’t think you’d expect a modern professional to describe their young patients as “dim”, or “miserable” (Figure 1). Nor is there the need to list “bombing” as an attributable cause of an acquired constant convergent squint before. Despite these societal changes, I still use the same broad diagnoses and treatments in my practice today.
There’s a huge amount to do to change this. In my PhD I’m making a start by understanding how strabismus (misaligned eyes) affects people through their life course. One way I’m doing this is by inviting adults that had the childhood-onset condition to qualitative interviews. The Children of the 90s, or ALSPAC, cohort is the perfect platform to do this because they have 30-year-old, engaged participants with known childhood eye history. However, as I invited participants unexpectedly to an interview, referring to conditions they had as children, it raised some interesting ethical challenges around handling their data.
Unintentional disclosure of past health data
When I invite an ALSPAC participant to an interview I tell them they had an eye condition as a child. Most already know this, but there may be some people that this is news to. Here, I need to be very careful. Even in the context of their regular communications with ALSPAC, and the consent they’ve given for use of their data, it is reasonable of participants to ask how I know this about them. Furthermore, some participants could worry about what this new-to-them eye condition means for their wider health.
To invite a participant sensitively I could attempt to get their consent to receive an invite. I first send a letter to all participants, advising that I’ll soon be inviting a subgroup to a study of an eye phenotype. If they do not want to know whether they’re affected, they can opt out now. A fortnight later, I send a traditional invite to eligible participants that have not opted out. The problem with this two-step approach is the potential effect on recruitment rates.
A more favourable approach is a single invite that somehow communicates how I’ve come to know about a participant’s condition, and what it means for them. This requires a good understanding of participants perception of the condition and their expectations of how ALSPAC looks after their data.
The ALSPAC Public and Participant Advisory Panel (APPAP) exists for precisely these purposes. I met with them online and was greeted by an enthusiastic, multi-disciplinary bunch. They had so much advice, ranging from answers to my above questions to advice on letter formatting (from a graphic designer) and security of QR codes (from an ex-police officer).
To my surprise, participants remembered the eye tests they’d had when they were seven. They knew loosely what the tests meant, too, which gave me a ‘hook’ for my invite letter. I began my letter with:
“When you were 7 years old you came to the Children of the 90s “Focus @ 7” clinic, where an Orthoptist tested your eyes. They showed you eye charts to check if you could see small letters, used a specialist camera to see if you needed glasses, and asked you to look at pictures while they measured the alignment of your eyes. The tests showed that your eyes were misaligned. An eye misalignment is sometimes called squint or strabismus. We would like to speak with you to find our whether your squint has affected you in the time since then.”
Trustworthiness of ALSPAC
Participants are aware of the amount of their data ALSPAC holds and value the institution greater than the individual researchers that work within it. APPAP thus advised that initial invites and communications should come centrally from ALSPAC and should not contain my name or details at all. Interested participants respond directly to ALSPAC who then put them in touch with me for enrolment to the interview.
Final recruitment
I’ve since finished recruitment to the eye interview without hiccup. There were 200 eligible participants, 125 of which had up to date contact details registered with ALSPAC, and 43 responded with interest in taking part. This was an all-round recruitment success, given my original target of 15 interviews.
I feel I’ve added to ALSPAC and learned the value of carefully considering approach strategies in whatever setting I’m doing research. Taking advice from representatives of the studied population was beneficial in expected and unexpected ways.