In absence of the patient voice, health industry decisions affect quality of life

The recent Health Datapalooza converged payers, providers and other relevant industry stakeholders to discuss the era of big data we are entering in health care. But with too few patient organizations and advocacy leaders on the conference’s agenda, Health Datapalooza exemplifies the challenges we face as the demand for big data in health care grows. If advocacy groups don’t have seats at the discussion table, we risk losing the most crucial factor to meaningful health reform—the patient voice.

While we must continue to understand and expand quantitative data on our health industry, it is imperative that health reform decisions are deeply informed by the qualitative data that can only come from meaningful, on-going conversations with patients. Many health care stakeholders and policymakers are eager to work with patients, but neglect to pursue them for fear of the amount of time, energy, and resources necessary to engage individuals in discussions about their health system experience.

{mosads}The solution, is simple: engage the advocacy organizations who lead patient communities. It is these advocacy organizations, created by patients, that maintain expert and on-going relationships with individuals in order to understand the common issues faced by those with a particular condition. From recognizing consistent challenges in care delivery to improving the patient decision-making experience in the exchange, patient advocacy organizations see the big picture.

Hemophilia Federation of America (HFA)’s most recent initiative exemplifies how patient advocacy organizations are experts on their communities and the issues affecting them, and are able to translate the experiences of individuals into broad trends and policy recommendations. HFA’s Project CALLS (Creating Alternatives to Limiting and Lacking Services) spoke directly to members of the bleeding disorders community to determine how current policies were affecting each patient’s ability to effectively treat their disorder. CALLS found that many patients were forced to use pharmacies that did not meet their needs, participate in lengthy prior authorization processes, or have their medicine infused by a physician at a greater cost than the standard of care for home infusion. Such information is not only immeasurable, but also immeasurably valuable, particularly since these issues led patients to delay their care.

That’s why HFA joined Partners for Better Care, a partnership of patient advocacy groups and responsible industry leaders representing more than 100 million individuals living with chronic conditions nationwide. The coalition’s patient advocacy leadership recently released a bipartisan Patient Charter that addresses the critical need for patients to have an active and formal voice in the transformation of health care, which must be facilitated through the advocacy groups that represent them. 

Partners for Better Care and its members recognize that high quality, patient-centered care is available in the U.S., but it’s not yet available to all patients. Each individual’s journey through the health system is diverse and their courses of treatment do not have a one-size-fits-all solution. By understanding the diverse experiences of patients, advocacy groups can observe common challenges that, if improved, would change health outcomes within and across diseases and conditions.

While individual patients and providers are responsible for determining the medically-necessary course of treatment to secure the best possible health outcomes, all too often the successful management of a condition is dictated by whether that individual patient can fight to get affordable access to medically necessary treatments, therapies, medications, and devices. Patient groups are willing to identify and advocate for these issues on behalf of the patients they represent, but industry leaders and policymakers must be willing to listen.

Engaging patient advocacy groups as equal partners in health reform decisions is essential to improving the cost, quality, transparency and accessibility of health care. Now more than ever, patients play an active role in their health and continuously seek to own new elements of their care. As policymakers and industry leaders move toward expanded use of data and analytics to guide decision-making strategies, they must not forget to offer advocacy groups a seat at the discussion table.

Verb is Director of Policy and Government Relations for Hemophilia Federation of America. Richards is Executive Director of Partners for Better Care, which is a coalition representing millions of individuals with chronic conditions in the fight for patient-centered health reform.