People are becoming increasingly empowered, and their experience of their own health and that of their children can often render them experts in a particular condition. The concept of co-creation of support tools be they apps, websites or educational tools is now less of a “nice to have” but mandatory to the success and utility of the end product. Indeed, in our experience, the co-creation process between patients, patient groups and Pharma clients can often foster openness, transparency and begin to bridge the trust gap that is still often needed between these parties. In this blog, we discuss some of the key learning points from years of co-design to develop unique patient support tools that can make a true difference to patients’ lives.
The Evolution of Patient Attitudes
Changes in social attitudes to health have evolved over the last decade. Patients are now more likely to want to find out about their disease for themselves, whereas generations before would have looked solely to their doctors for information and advice. Health Care systems have become stretched and patients are encouraged to seek information from a new variety of sources.
We are fortunate that we have prospered from technological opportunities like never before, with Dr Google being the first port of call for information for most.
But whilst we all accept that the provision of high-quality, evidenced based information, co-created with users is fundamental to the success of any campaign or programme. as digital tools and care structures become ever more sophisticated, it is essential they meet the digital and health literacy of the most vulnerable populations, people living with rare conditions and their associated co-morbidities otherwise there is a risk the health divide will widen.
The Technological Evolution
It has never been cheaper, faster or easier to develop and distribute information to disparate audiences as it is now, at a time convenient and relevant to the patient. But even digitally savvy, enabled patients can become overwhelmed by so much information available to them. Large sections of the World remain ill informed, due to poor health literacy and/or lack of access to technology.
And as promising as the opportunities are, we still want to deliver information to patients in a way that truly informs everyone in a consistent manner to allow them to navigate the complexity of healthcare systems; the complexity of which is amplified in the rare disease space.
Patient resources originate from many groups and with the advent of austerity measures Globally, community and charitable organisations have contributed a wide range of information to patients in addition to those sponsored by Pharma companies. Many have been created with end users themselves allowing a balance of the perspectives of physician and patient, family and care givers and support the best outcomes for patients. But many have not and at best have been tested at the end of the process, often when it is too late.
Moreover, this abundance of materials and information can serve to overwhelm patients and their families who may begin to question just which resources to trust.
Even in the rare disease space where the information on many rare conditions is scarce, interested Pharmaceutical companies may compete with charities and support groups resulting in fragmented educational resources. In our experience this does little to endear Patient organisations and charities to Pharma companies at a time when trust, partnership and collaboration is hugely important.
Partnership and Collaboration Is key
Over the last decade, the Directors at Swii.ch have been co-creating digital and other types of communications alongside Physicians, patients and their families. Five years ago, it may have been acceptable to re-create information that was similar to that of competitor companies and charities. Nowadays, our clients. are increasingly asking for communications that add value and differentiate them vs others. Although all rare conditions are unique, key themes still emerge across orphan conditions in terms of patient needs and we summarise our seven steps below to deliver engaging and differentiated content.
Don’t reinvent the wheel
If existing, reliable material is already available, look at partnering options rather than replication of assets. This provides a simpler ecosystem for the patient and can enhance trusted relationships with patient organisations.
Provide Support Tools for Care Givers, Families and Patient’s partners
Care givers and families are key to patients to help to understand their condition and help them to find resources for loved ones. In rare conditions especially, providing care giver and parental support is a huge opportunity.
Provide Support for Employers of people with rare conditions
Provide information and education for employers and on a country specific level to help patients to understand their employment rights at all stages of their condition and through the clinical trial process.
Provide Help and advice for educators, teachers and for students
Information on access to support to allow for a less interrupted education process, and on a country level disability student access and grant applications.
Facilitate the Physician – Patient Dialogue
Analyses indicate a known discourse between Physician and patient in terms of condition nomenclature, language and in the interpretation of needs and values. Providing tailored information to patients, families and Physicians who may be unfamiliar with rare conditions may help to bridge these gaps.
Always Consider a multi -channel approach
Although traditional leaflet type approaches printed off in the Physician’s office may seem to be a thing of the past, our experience has shown that a multi- media approach (one involving face to face, digital and print communications) is key to some of the most successful patient engagement tools. In some cases, we have seen a combination of face to face patient meetings and web portals enhance recruitment into clinical trials.
Always Always co-create
However hard it might be to recruit patients and their families to co-design events don’t be tempted to cut corners. Input from end users at an early stage can save time and money in the long run, build relationships and create useful tools that stick!
In summary, we all need to embrace a two- way relationship where consumers (patients) and the charities and groups who represent them work together to create seamless and simplified solutions and information.
Information that was once purely treatment focussed, is now strongly rooted in patient and family needs.
Companies who can provide information with practical and emotional guidance alongside treatment advice that supports the patient and their family through their whole journey will truly stand out.
Rob Wyer is the Founder of Swii.ch Health, Europe’s only rare disease digital communications agency.