And Action: The Person-Centered Hearing Network is moving PCC from awareness to global action

By Amanda Farah Cox

Together with its partners, the Ida Institute has launched the world’s first global network dedicated to person-centered hearing care. The Person-Centered Hearing Network (PCHN) convened for the first time from August 27-28, 2019, in Skodsborg, Denmark. Bringing together representatives from some of the world’s leading universities, professional associations, and patient organizations, the network will work to advance PCC globally through a concrete action plans.

“Around the world, there is an increased recognition of the value of person-centered care, but the implementation of PCC in hearing care is lagging behind. We need to move from awareness to action and this network will allow us to create a global alliance working towards that goal,” said Managing Director of the Ida Institute Lise Lotte Bundesen in her opening address.

The power of networks

The ambition of the network is to enhance the quality of hearing care by promoting a culture that strengthens the voice of patients in hearing care and empowers them to participate actively in their own care. The network will allow members to exchange knowledge and experiences, identify common interests, and foster new collaborations to advance person-centered care. It will help build connections among different types of organizations, as well as across and within geographies.

“My hope for this new platform is that we don’t have to spend time in our respective organizations developing the same solutions to the same problems. If we have to reinvent the wheel every time, we will never move from ground level,” said Neil DiSarno, Chief Staff Officer for Audiology at the American Speech-Language-Hearing Association (ASHA).

“Networks can create global influence and change. It’s not about critical mass, but critical connections  - this is what will make the difference in what we can achieve,” said Melanie Gregory, Group Head of Audiology, Leightons.

Strengthening the patient’s voice

The participants made a plea for strengthening the voice of the patients in all aspects of hearing care. 

“Hearing care must be grounded in the reality of people. Today, patients are often ‘the last to know.’ At this meeting, I’ve heard a real recognition that we need to work closely with patients and involve them in the development of solutions on all levels,” said Louise Pritchard, Executive Director of Services at Action on Hearing Loss. 

Participants also stressed the need to increase awareness and understanding of PCC, and to work with patients to identify what PCC looks like from a patient perspective.  

“There is a big gap between how professionals and patients think about PCC,” said Nerina Scarinci, Associate Professor & Head of Speech Pathology at The University of Queensland. “We need to think about what patients really want and what PCC means to them.”    

The question of how to communicate about PCC in a way that is meaningful to patients was also identified as an important topic for the PCHN to work on. 

“We need to tailor information about PCC so it makes sense to people,” said Louise Prichard. 

Educating, setting standards, and measuring

Another major topic at this inaugural meeting was how to infuse audiology education and training with PCC. In effect, educating future generations of hearing care professionals and providing opportunities for clinicians to upgrade their person-centered skills is key to changing mentalities. In many educational settings, the focus is still on installing technical skills in students and PCC is still not taught systematically as part of curricula. 

There was also unanimous agreement that the network should work to strengthen the capacity to measure the effects of PCC throughout the hearing healthcare system. In order to ensure the efficient implementation of PCC in hearing care the participants also discussed the necessity of integrating PCC principles in national standards and to introduce PCC as the standard of care baseline. 

“We have an opportunity to change standards and practice. Standard-setting bodies must see the necessity of educating in PCC,” said Neil DiSarno.

The PCHN roadmap

The two days of intense debates and group work led to the establishment of a joint roadmap that will lay the foundation for the collaboration in the coming year. 

Activities include the establishment of a common PCC definition for policy making, standards and funding; the creation of a platform where professionals, academics, and decision makers can share information about PCC; the development of a patient charter and resource providing patients with information about person-centered care and what to expect on their patient journey; and the establishment of learning objectives and measurements for PCC in audiology education. 

Thanking the Ida Institute for the initiative, Patricia McCarthy, Professor of Audiology at Rush University, reminded the participants of the value of PCC, not only for patients but also for hearing care professionals who have to navigate in a competitive landscape of over-the-counter sales, new technologies and restrictions in public spending. “Hearing healthcare is under assault, but PCC is what makes us distinct,” she said. “We need some leadership and we are grateful to the Ida Institute for making us come together.”