Philanthropy can be a huge benefit to cardiology. A case example of the Karla Völlm Foundation and the Münster Adult Congenital Heart Disease Centre

Direct philanthropic support represents a major source of funding for North American cardiovascular institutions. Far from being only a sporadic source of income, institutions on the other side of the Atlantic regularly employ entire teams of professional fundraisers to this end. In 2017, 63% of all US institutions were involved in a fundraising campaign according to data from the Association of American Medical Colleges.1 It has been estimated that health-related organizations received an estimated 40.7 billion US dollars in 2018.2 This is clearly on the background of a different healthcare system, mentality and tax laws compared to Europe. However, the potential for European centres is evident as personal wealth is not a unique feature of North America.

 

While indirect donations to cardiovascular medicine via charitable Foundations such as the British Heart Foundation are also common, direct service-specific involvement on a substantial scale appears only sporadically in Europe. The reasons for this discrepancy are diverse. It has been highlighted that senior cardiologists may lack the patience required or even be reluctant to engage in obtaining substantial philanthropic funding.3 This is—in part—related to the protracted process needed to establish and maintain donor interest and a viable donor-institutional relationship.

 

Unlike sporadic ad hoc donations, substantial transformational gifts generally follow the personal interests of benevolent sponsors. As a consequence, funding is intended to achieve the vision of the sponsor, linked to high visibility potential innovation projects and coupled to deliverables or performance criteria expected in the process.3–5 From our observations, especially European institutions and colleagues greatly value individual autonomy, thus, resenting perceived interference by external funders. However, despite the challenges, philanthropic support offers great opportunities not provided by conventional governmental funding schemes (Figure 1).

Governmental initiatives are generally hampered by substantial bureaucracy and inertia while private donors may be in a position to allow for swift decisions and project realization. This is particularly relevant for innovative, time sensitive areas such as machine learning and artificial intelligence. In 2017, the Peter Munk Foundation pledged a 100 million Canadian dollar donation for the establishment of a digital cardiovascular health platform, artificial intelligence, and machine learning to the University of Toronto Health Network. This initiative was aimed to improve diagnosis treatment and management of cardiovascular patients by harvesting efficiency gains providing by novel machine learning technologies.

 

In a similar fashion—albeit on a smaller scale—the German EMAH Stiftung Karla Völlm has unbureaucratically supported artificial intelligence research at Münster University and the German National Register for Congenital Heart Disease (NRCHD), which has resulted in a series of important high ranking publications, demonstrating feasibility and setting the scene for these data rich technologies in adult congenital heart disease (ACHD).6–8

 

In addition, the Foundation is currently sponsoring the digital transformation of the NRCHD and the establishment of a multicentre imaging warehouse to enable training of state-of-the-art artificial intelligence models across the spectrum of ACHD.

 

Philanthropic research support may thus be particularly relevant for ACHD, commonly lost in the ‘Death Valley’ provided by conventional governmental and industry dominated research funding. Classic governmental funding schemes commonly focus on basic science and translational research, often ignoring the value of clinical (increasingly big), data-driven research that is particularly relevant to the field of congenital heart disease. In addition, the field of ACHD is in desperate need for prospective randomized trials, that—given the limited market share and absent business case—commercial companies are not enthusiastic to fund.

 

Herein lies potential for philanthropic support to fill this gap. Both, data-driven initiatives and small-scale clinical trials should appeal to private sponsors as the direct clinical consequences are usually obvious and easy to communicate. Involving patients and patient organizations is also paramount in the process to allow for patient participation and provide networking opportunities to recruit potential donors. This form of support should, of course, supplement rather than replace formal governmental funding thus accelerating innovation in the field of ACHD.

 

On a side note, we have learned that actively engaging with donors provides exciting opportunities beyond mere access to financial resources. Actively engaging with donors who often have a personal interest and deep understanding of relevant medical aspects, coupled with their professional expertise and experience, allows for innovative out-of-the box approaches to relevant medical problems. In addition, depending on the business background some may provide direct access to emerging commercial innovations, thus creating fruitful synergy between academia and the private sector.

 

Earlier this year, the 2020 European Society of Cardiology (ESC) Guidelines for the Management of ACHD were published.9 The taskforce was chaired by Professors Helmut Baumgartner and Julie De Backer. Prof. Baumgartner is the Director of the Department Cardiology III: Adult Congenital and Valvular Heart Disease at the University Hospital in Münster Germany. He has served the ESC for many years including roles as working group chairman and chaired the task forces for the 2010 ESC Guidelines for the Management of Grown-up Congenital Heart Disease and the 2017 ESC Guidelines for the Management of Valvular Heart Disease. For his ongoing prominent academic and clinical role, he was awarded the ESC silver medal in 2016. One of his mentees and co-workers at Münster University Hospital, Prof. Gerhard Diller, is the current Chair of the ESC Working Group of ACHD, lead author of the timely Position Paper on management of ACHD patients during the COVID-19 pandemic and together they have published extensively including several recent original papers in the European Heart Journal.

 

On clinical grounds, the Münster ACHD Centre is one of the largest of its kind in Germany providing the entire tertiary spectrum of care for the rapidly emerging population of ACHD patients. However, despite its global visibility, the Münster ACHD Centre is a new ‘kid on the block’ compared to other Units in Germany. It was founded in 2008 with the recruitment of Prof. Baumgartner from Vienna, Austria. Dr Diller joined shortly thereafter from the Royal Brompton Hospital in London, UK. The newly created institution itself had been the brainchild of Karla Völlm, the mother of an affected patient, visionary and benevolent donor and Professor Günther Breithardt (Chief of Cardiology at the time and former ESC president). At the time, a pressing need for appropriately equipped and staffed supra-regional centres caring for ACHD patients existed in Germany.

 

A multimillion Euro donation by the Karla Völlm Foundation (EMAH Stiftung Karla Völlm; formally a support association at the time) with Karla Völlm’s vision and Prof. Breithardt’s and Prof. Roeder’s (Medical Director of the University Hospital) support, allowed for the establishment of the ACHD Centre in Münster and the recruitment of high-potential individuals. Over the years the newly established Karla Völlm Foundation continued to support successful research projects thus advancing the field, creating visibility for the centre and filling the gap of limited governmental funding. The impact of the synergy between Foundation and ACHD Centre reaches beyond its local effect for patients. In 2015, the Karla Völlm Foundation established the joint Münster-Royal Brompton Fellowship grant programme in ACHD. This programme allows international junior colleagues to train clinically and academically in ACHD at Münster University and the Royal Brompton Hospital in London. The programme is aimed at fostering clinical excellence and supporting emerging clinical and academic leaders in the field for the greater benefit of ACHD patients across the continent. For her lasting contribution to congenital heart disease care, Karla Völlm has been awarded the Order of Merit of the Federal Republic of Germany.

 

By anecdotally highlighting the story of the Karla Völlm Foundation and the Münster ACHD Centre we aim to give a taste of the possibilities for successful collaboration between academic medicine and philanthropists that may serve as a model for other institutions across the continent.

 

As cardiovascular medicine evolves from a paternalistic to an inclusive model of care, accepting patients as equal partners, the scope for innovative funding schemes including personal donors and grateful patients broadens. While certainly not a panacea for stagnating government research funding, not without intrinsic challenges and not equally suitable across the spectrum of cardiovascular medicine, the potential benefits of engaging with substantial donors providing transformational gifts should not be underestimated. Especially for subspecialties outside the focus of mainstream health policy or not directly benefiting from lavish government funding, benevolent funding may offer opportunities, ultimately benefiting patients with rare diseases or disorders lacking adequate public visibility.

 

Conflict of interest: none declared.

Standfirst: Philanthropy can be a huge benefit to cardiology. A case example of the Karla Völlm Foundation and the Münster Adult Congenital Heart Disease Centre