Patient-powered research networks

What is it?

Patient-powered research networks (PPRNs) are online platforms run and developed by patients, patient partners (such as patient organisations and advocacy groups) and other stakeholders, including carers, clinicians and researchers. They are used to collect and organise health and clinical data focused on either a specific disease or multiple disease areas. The data can then be used in relative effectiveness research (to compare different medicines). PPRNs place a strong emphasis on collecting real-world data (RWD) and using patient-centred outcomes. They aim to better inform, and possibly accelerate, the decision-making process in the assessment of relative effectiveness.

The key objectives of PPRNs are to:

  • contribute RWD to relative effectiveness research
  • increase patients’ involvement in research and allow them to contribute to or oversee the research activities of their network.

For a review of the usefulness of PPRNs in relative effectiveness research, see A Review of Patient-Powered Research Networks in Relative Effectiveness Research.

Examples of PPRNs

  • PCORnet was set up by the Patient-Centered Outcomes Research Institute (PCORI) in the US; it has funded and supported approximately 30 PPRNs across multiple disease areas.
  • PatientsLikeMe develops data-sharing partnerships to contribute health data on a wide range of disease areas, with the aim of the improving products, services and care for patients (see Social Media).
  • The Accelerated Cure Project focuses on sharing information (biosamples and data from 3,000 patients) with researchers to accelerate research on multiple sclerosis.

Why is it useful?

  • Availability of data: data can be made available to researchers and scientists, regardless of their involvement in the network.
  • Sharing of data: research institutes and universities can form partnerships through which patient-contributed data can be shared.
  • Enables patients to better describe their needs and preferences: patients can more clearly describe their needs and preferences because they can track their condition over time.
  • Patient-focused data: patients provide crucial information, for example, about their preferences and the effectiveness of interventions.

What are its limitations?

  • Incomplete data: self-reported clinical information may have limited usefulness for relative effectiveness research because data can be partial and incomplete.
  • Lack of generalisability: patients involved in PPRNs may not be representative of the population of interest (McCarrier et al, 2016) so the results may not be generalisable to all patients with the condition.
  • Lack of standards and uniformity: data may not be uniform across different PPRNs preventing comparison between them.
  • Privacy and security: there may be data privacy and security issues.
  • Results may not benefit the patients involved: some patient-generated data may be most useful to refine future research and help future patients, which might discourage patients from taking part. It has been suggested that patient-generated data should be immediately actionable and implementable (Howie et al, 2014).

What do stakeholders say?

Patients are strongly motivated to be involved in PPRNs because they can make an active contribution to medical research. However, security and privacy concerns need to be addressed.

GetReal commissioned a survey of key decision makers to understand their views of PPRNs (see A Review of Patient-Powered Research Networks in Relative Effectiveness Research and a Survey of Key Stakeholders: Report Commissioned by GetReal).

A range of stakeholders, including representatives of public policy organisations and health insurance trade associations, were interviewed by the United States Government Accountability Office to inform a report reviewing the work of PCORI (see Comparative Effectiveness: Initial Assessment of the Patient-Centred Outcomes Research Institute, GAO 2015).

Issues included:

  • lack of standardised data across PPRNs, which was felt may slow the process and make it more resource intensive
  • financial sustainability of PPRNs in the long term
  • lack of complete data affecting acceptability.

Key contributor

Antonio Ciaglia, International Alliance for Patients’ Organizations