impact

PATIENTS

Outcomes reported by patients are not usually incorporated in a comprehensive and systematic way into the decision-making process affecting their individual clinical care. Swift technological innovation represents a unique opportunity to provide patients with a trusted and tested system to register critical and reliable information about their symptoms, treatment experience and preferences which can be shared with their physicians. This allows for a richer and more fruitful dialogue between the patient and his/her health care provider resulting in more tailored and effective treatment decisions.

H2O is set to empower and encourage patients to take better control of their health by giving them more control of information about themselves and their health.

With H2O, patients will be able to:

  • Track personal measures about their own condition during diagnosis, treatment and follow-up and easily identify any patterns that might indicate personal (eg. patient-specific) manifestations or triggers for symptoms.
  • Through comparing with other patients from H2O, better understand burden of disease at a broader level and how their own experience and measures compare to those of other patients with the same condition. This tool can also help to make an assessment on the quality of care that the patient receives.
  • Gain access to measures and information on which care decisions will be based and have the possibility to better discuss their own thoughts and preferences in individual consultations with their physician or other health care professional.
  • Have an integrated view of their own health information at hand, enabling them to refer to it during a visit to any health care professional, regardless of the setting.
  • At the same time, national and international patient organisations will be able to see aggregated information on their patients and use the evidence in providing guidance and advocacy.

HEALTH CARE PROVIDERS

With limited – if any – structured and actionable information from the patient-perspective, health care providers do not have a holistic view of the individuals and the population under their care.
H2O is set to reverse this by enabling health care providers to:

  • Get information reported in a structured way by their patient which, combined with the patient’s clinical data will give them an integrated, more holistic, view of the patient’s health status.
  • This additional, structured, information will permit a more effective discussion with a patient and enable better data-driven decision making and personalisation of patient care.
  • Get access to the patient-reported data between consultations which will allow them to do remote follow-ups on the evolution of patient’s condition and health status.
  • Get a picture of their patients, the patients’ views and preferences, and be able to benchmark (anonymously) with similar patients in other practices.
  • Become part of and contribute to a community that builds patient engagement and compliance and data-driven decision-making, where data is considered a common good to improve patient care.

HEALTH AUTHORITIES

Health care systems are faced with the challenge of optimising their resources to deliver the best care. The framework of independent, patient-centred health outcomes observatories will provide a standardised information system containing valuable data at scale on patient reported outcomes -both at individual and population level- to inform better health care decision making and policies, thus brining also more effectiveness into healthcare systems.

H2O will allow health authorities and regulators to:

  • Supplement existing data sources to develop a deeper understanding of the burden of disease and the performance of the healthcare system within a country to identify areas for potential improvement.
  • Inform HTA analyses and processes with patient perspectives, including PROs and PROMs from patients within their jurisdiction and, where appropriate, beyond. This will permit continual adjustments to health care approaches, making continuous value based health care improvements a reality.
  • Enable health authorities to compare different patient pathways and select the most efficient ones, optimising patient outcomes and costs.
  • Promote outcomes based pricing and reimbursement negotiations, including outcomes-based contracting.

RESEARCHERS

H2O opens a new window of opportunity for clinical research by providing the necessary infrastructure and data governance system to conduct cross-country analysis and facilitate the creation of European networks for observational and randomised studies using real world evidence. This innovative framework will facilitate the consolidation of health data -now fragmented- in Europe, thus fostering a more competitive research environment.

By capturing new information from the patient perspective, the H2O project represents an innovative opportunity to advance population health research using real world evidence based on data from patients combined with clinical data.

H2O will enable researchers to:

  • Run research studies using the infrastructure and/or data, e.g. cross-country analyses to provide insights into burden of disease and disease evolution as well as identify potential trends for further studies.
  • Assess the impact of new therapies on the population and identify optimal treatments for different types of patients by distilling relevant insights from patient-reported and other standardised patient outcomes data.
  • Facilitate the use of these European observatories networks for observational and randomised studies to assess changes in clinical practice using the real world data.

PHARMACEUTICAL INDUSTRY

Learning about what works (and does not work) for patients will enable pharma companies to better, and more quickly, understand patient journeys and therefore become more patient-centric in their processes to develop more effective drugs and treatments.

H2O represents an opportunity to:

  • Create a governance model where industry can also participate and contribute as a trusted partner.
  • Facilitate access to pooled and anonymised or aggregated data in an ethically and legally appropriate and structured way.
  • Better enable patient centricity
  • Contribute in a significant way to the wider adoption of value based health care by including patient perspectives in a meaningful, action-oriented manner.
  • Align industry more closely with the goals of health systems by funding a patient-centred initiative and engaging with the whole healthcare ecosystem to work on an initiative that promotes health data usage to improve patient care.

REGULATORS AND HTAs

Outcomes are amongst the most powerful indicators of effectiveness, but often the least available to these decision-makers. They have instead to rely upon a series of process measures, and some limited clinician collected outcomes, instead of making decisions based more often on the basis of real-world evidence, especially in relation to indication extensions and post marketing surveillance.

H2O will ensure that Regulators and HTAs:

  • have access to quality, trustworthy outcomes data, especially on newly approved medicines and high cost treatments. The data collected by the Observatories will represent diverse patient populations and will also specify clinical populations in terms of disease severity, comorbidities, etc to provide the sound evidence needed to incorporate patient perspectives into their decisions.
  • incorporate patients’ PROs and PROMs in their analyses to inform of potential improvements in health care, thus contributing to value based health care.