“It seems to me,” said Parkinson’s patient and activist Jon Stamford, “that ‘quality of life’ is when you tell me what’s missing in my life. That seems to me to be rather odd.” This polite but piercing insight was shared on stage in 2012 at the International Society for Quality of Life Research (ISOQOL) in Budapest. Traditionally an academic and scientifically focused group, ISOQOL’s members specialize in the development and use of patient reported outcome measures (PROMs) in academic studies, observational research, and clinical trials.

In 2012 ISOQOL took the unusual, but increasingly common, step of inviting patient representatives on to the stage to share their experiences, provide new perspectives, and provoke new thought among researchers. Jon’s experiences as a retired Parkinson’s researcher and now (ironically) a Parkinson’s patient highlighted the disconnect between the impact that researchers see and the impact that patients feel.

While quality of life instruments in Parkinson’s disease focused on his walking or his tremor, what mattered most to Jon was not embarrassing himself on the cricket pitch with his batting performance. It’s a timely issue, as QOL measures and PROMs move from being research tools developed to measure the wellbeing of populations (with input from patients as participants), to more precise tools used in clinical management or used (or even made) by patients themselves, who are keen to quantify their progression and self experiment.

Two years later, and the conference organizers at ISOQOL have further embraced patient centricity. At this year’s Berlin meeting there were invited patient advocates, discounted patient registration, platform presentations, and a half day program of workshops and seminars that critically examined the contribution of patient input in the development and interpretation of PROMs.

While there are indeed many challenges in implementing patient involvement—such as selection, training, managing expectations, costs, and time—the meeting was reassured and inspired by a number of leading organizations. Lori Frank, from the Patient Centered Outcomes Research Institute (PCORI), detailed her organization’s approach to involving patients as decision makers in funding allocation, and took great pains to differentiate true delegated power from mere tokenism. PCORI also requires meaningful engagement of patients and other stakeholders in the research it funds.

Rheumatologist John Kirwan, based in Bristol, the UK, shared his experiences of weaving “patient research partners” into the fabric of the Outcome Measures in Rheumatology group (OMERACT), as well as in his clinical practice in Bristol. OMERACT’s patient research partners set research priorities, consult on scientific study design, and even co-author research studies and teach medical students. On the clinical side, a randomized control trial of letting patients request appointments as they need them rather than being given automatic repeat appointments proved a great success, reducing outpatient clinic costs by 30%, with no negative impact on patient outcomes and a high degree of satisfaction.

As would befit the meeting, Kirwan was supported by patient advocate Maarten de Wit from the Netherlands, who has participated as a patient advocate in OMERACT’s work. He is also a published author, having described the iteration cycles and lessons learned in introducing patient involvement to a new study area.

So what does this all mean in practice for PROMs? Whereas once the primary concerns of instrument developers was whether their scale would get published in a top journal or used in a clinical trial, now they might be just as concerned as to whether their scale actually measures things that matter to patients and caregivers living with their disease, or whether it’s possible for patients and clinicians to have a shared dialogue about what changes in their scores might mean for their clinical management.

We’ve seen from Lucien Engelen’s work on the “Patients Included” mark for conferences that it’s essential to have patients on stage, in the audience, and in the program committee, and it seems that ISOQOL is already on the cusp of qualifying for this quality mark.

But what of PROMs? Perhaps we will one day see an equivalent mark for instruments that we deploy for research or in the clinic. This will ensure that patients were not simply participants or data points, but were involved in the development of the instrument on the steering committee, as co-developers, as co-authors, as true patient partners. Perhaps then we can have more confidence that, to reverse Jon’s critique, “quality of life is when I tell you what’s missing in my life” and we can develop better interventions to improve outcomes.

Paul Wicks is vice president of innovation at PatientsLikeMe.

Competing interests: Paul Wicks is an employee of PatientsLikeMe and receives research funding from pharmaceutical companies. For full details, see his page on the Patient Panel group.