Overview
The Heart Failure Policy Network (HFPN) Trailblazers Hub is populated with examples of:
- Care Trailblazers: effective and scalable models of multidisciplinary and integrated heart failure care that have gained organisational and/or political support.
- Advocacy Trailblazers: stakeholder groups communicating with decision-makers to win high-level policy recognition and/or investment in the area of heart failure.
Examples are identified on a rolling basis using the inclusion and exclusion criteria alongside the search methodology outlined in this document. Stakeholders may also recommend initiatives for potential inclusion, which will be reviewed and independently approved by the HFPN Secretariat in line with the Hub’s criteria.
Identifying examples
Inclusion and exclusion criteria
The Trailblazers Hub collects examples of inspirational system transformation and political advocacy in heart failure. It aims to raise the profile of innovators in heart failure policy and disseminate the main lessons that they have to offer.
Inclusion criteria
- Initiatives must have a credible focus on heart failure, either as a stand-alone issue or within the broader context of cardiovascular disease and/or non-communicable disease.
- Initiatives may target any age group and heart failure type (HFrEF, HFpEF and HFmrEF).
- Initiatives must be relevant to at least one part of the heart failure journey (presentation and diagnosis, discharge planning and early follow-up, clinical management, patient empowerment and self-care, or advance care planning).
- Initiatives should focus on Europe, with possible exceptions made where there is high relevance to European countries (e.g. prospect of adoption or emulation).
- Initiatives may come from published or grey literature, policy documents, news stories, conference proceedings or personal recommendations.
Initiatives must fall under one of the following headings:
1. Care Trailblazers
These initiatives must meet the following criteria:
- specialist-led input (e.g. from cardiologists, internists and/or heart failure nurses)
- integration across healthcare settings or services
- demonstrable improvements in patient or process outcomes (e.g. hospitalisations, mortality, quality of life, healthcare costs, adherence to clinical guidelines)
- political and/or organisational support for the implementation of the model (i.e. support from decision-makers).
For example, high-level clinical networks integrating care across settings; models of multidisciplinary and integrated care that are scaled up across a region/country with support from decision-makers.
2. Advocacy Trailblazers
This includes engagement with local, regional, national or European decision-makers that:
- has the potential to advance meaningful policy change in heart failure (e.g. development of formal plans on heart failure, inclusion of heart failure in cardiovascular disease and non-communicable disease initiatives)
- has led or is likely to lead to investment or meaningful redress of barriers in multidisciplinary and integrated models of heart failure care (e.g. government funding for pilot studies or the roll-out of effective care models).
For example, a multidisciplinary heart failure task force successfully making the case for the inclusion of heart failure in national healthcare plans; advocates developing training curricula and securing investment for national workforce accreditation programmes.
Policy initiatives created or led by the life sciences industry can be considered for inclusion in the Hub if they meet the following criteria:
- The initiative aligns with the overall mission, objectives and Terms of Reference of the HFPN, as judged by the HFPN Secretariat.
- The initiative was developed in collaboration with key heart failure stakeholders, including healthcare professionals with experience or specialism in the syndrome (e.g. cardiologists, heart failure nurses, general practitioners, internists), patient organisations, people living with heart failure and decision-makers (e.g. hospital management representatives, policymakers, representatives from ministries of health).
- There are clear Terms of Reference for the governance of the project, which can be shared with the HFPN Secretariat.
- Findings/materials/events produced by the initiative are available in the public domain (i.e. not only available in company promotional materials).
Exclusion criteria
- Commercial products are not featured on the Hub; content is not biased to any specific treatment or therapy. The Hub is intended for educational purposes and does not promote the products of any sponsors of the HFPN, either directly or indirectly.
- Non-heart failure initiatives are excluded (including broad cardiovascular disease or non-communicable disease initiatives with no specific mention of heart failure).
Search strategies
Examples are identified from:
- PubMed, including the reference lists of published studies
- Google search and alerts
- recommendations by stakeholders and members of the HFPN (i.e. word of mouth).
PubMed
Search strategies for new initiatives on PubMed are presented below and will be used to guide periodic literature searches using fortnightly email alerts.
- Care Trailblazers
|
(“Heart Failure”[tiab]) AND ((“Proof of Concept Study”[Majr]) OR (“Chronic Care Model”[tiab] OR “Disease Management”[MeSH] OR “National Health Programs”[MeSH] OR “Continuity of Patient Care”[MeSH] OR “Clinical Competence”[MeSH] OR “Disease Networks”[tiab] OR “Outpatient Clinics”[tiab]) OR (“Delivery of Health Care, Integrated”[MeSH]) OR (“Accreditation”[MeSH] OR “Quality of Healthcare”[MeSH] or “Processes of Care”[tiab] OR “Process Performance Measures”[tiab])) AND (Europe[tiab] OR European[tiab] OR “European Union”[tiab]) |
- Advocacy Trailblazers
|
(“Heart Failure”[tiab]) AND ((“Patient Advocacy”[MeSH]) OR (“Health Policy”[MeSH]) OR (“Coordinated Care”[tiab] OR “Disease Management”[MeSH] OR “Delivery of Health Care, Integrated”[MeSH])) AND (“Europe”[tiab] OR “European”[tiab] OR “European Union”[tiab]) |
Google search and alerts
The HFPN Secretariat will regularly check the following websites for relevant updates:
- Heart Failure Association of the European Society of Cardiology
- National heart failure working groups and patient/non-governmental organisations
- World Health Organization – Cardiovascular Diseases web page
The following Google alerts will be set:
- “heart failure” AND (“effective model” OR “scalable model”) AND (“integrated care” OR “multidisciplinary care”)
- “heart failure” AND (“government initiative” OR “government program” OR “government programme” OR “health policy” OR “policy meeting”)
- “heart failure” AND (“strategy” OR “white paper” OR “consensus” OR “policy” OR “plan” OR “roadmap” OR “consultation”)
- “heart failure” AND (“Ministry of Health” OR “Department of Health” OR “Health Authority”)
- “heart failure” AND (“consensus” OR “recommendations” OR “position paper” OR “accreditation” OR “disease network” OR “disease management program” OR “disease management programme”)
Approval and sign-off
The HFPN Secretariat reviews and approves examples for inclusion based on the Hub’s criteria. If in doubt about any example, the Secretariat will consult with the HFPN Steering Committee. The Secretariat also has the right to set up a Project Advisory Group for further guidance. Full editorial control of the Hub and its content rests with the HFPN Secretariat.
Once examples have been approved, they are drafted in full, reviewed by the editorial team and posted on the HFPN website.
Drafting process
An initial draft is developed based on desk research (e.g. existing publications, press releases and website information).
The draft is emailed to an expert involved in the project. They are asked to comment and are invited to take part in a videoconference interview (see interviews with experts section below) .
Examples are formatted as follows:
- Summary: a brief overview of the initiative and what it has achieved.
- The challenge: a description of the issues/systemic gaps that the initiative has been designed to address.
- The response: a description of the initiative (e.g. care model, consensus document or advocacy approach).
- What has been achieved: overview of the initiative’s impact in terms of patient and process outcomes, decision-maker support and/or policy progress for heart failure.
- Next steps: any future aims and projects related to the initiative.
- Policy tips for heart failure advocates: succinct recommendations for other advocates hoping to emulate the initiative.
- Further information: links to relevant information, including websites, reports, publications, conference materials and videos.
Interviews with experts
Where possible, the HFPN Secretariat will schedule an interview with an expert associated with the initiative to verify and enhance the draft for the Hub.
Interviews are conducted via videoconference by a member of the HFPN Secretariat. A list of questions is emailed to the expert ahead of the call.
Experts have the opportunity to review the example before it is published on the HPFN website. They are welcome to include contact details with the example to facilitate contact with interested stakeholders.