Caregivers-at-home: The Ignored Heroes in the Patient Journey

But are you aware that they are a powerful yet ignored entity in the patient journey? Does anyone really recognize them and their value in the healthcare ecosystem? As Covid and Omicron cases increase, more and more patients with cancer, Alzheimer's disease, or Parkinson's disease, the number of caregivers at home continues to rise, and it's crucial that Pharma India recognize and support their pivotal role in patient care.

What can pharma marketers do to help caregivers at home?

I was speaking to Dr. Shailesh Vyas and Dr. Rajashri Vyas (names changed) our close family friends who run a 30-bedded nursing home. All in their family are doctors and their combined experience as doctors could be around 200 years. Here are the key highlights during my recent conversation with the family about caregivers at home.

• Over 90% of caregivers-at-home play an active role in the patients-doctor conversations. It could be the daughter-in-law, the mother-in-law, the son, and so on.
• More than 70% of caregivers at home say they do not have adequate knowledge of the disease nor of the medicines.
• Almost all the caregivers-at-home desire caregiver education to help manage their patients' conditions
• And a great majority experience stress related to their caregiving duties especially those having cancer, Alzheimer's disease, or Parkinson's disease. And can we forget the mother with a sick child?

Isn't caring for the little babies or even the elderly with chronic or disabling health conditions a herculean task?

It can be even tougher for those unpaid beloved ones of the patients who often manage the patient-at-home besides spending 10-12 hours at their offices or their workplace.

My father was a patient of Parkinson's disease and in his last stages was bedridden for over a year and a half. As the sole bread earner, I used to travel for over 15 days a month. My kids were still in their early teens and in school. To add to the woes, co-careldopa, the primary medication for Parkinson's disease, caused psychotic-like side effects. The entire task of the caregiver-at-home was on my wife. And she happily accepted that role. The nursing assistants were of no use as they were neither passionate nor had love or affection for the patient. And now, can you imagine both the physical and the mental plight of my wife? And she loved my father as much as she loved her own.

To whom could she seek help?

Pharma India must recognize caregivers at home as crucial stakeholders and partners in the patient journey. Pharma India must roll out caregivers-at-home support programs. We need to appreciate that most caregivers-at-home get physically, financially, and emotionally drained and don't feel equipped or qualified to provide optimal care.

Nursing assistants in Ahmedabad charge about a thousand rupees a day and maybe more in cities like Mumbai, Delhi, or Bangalore. So just imagine the value of free care given by the caregivers at home! I don't think that ever can be evaluated. And they do this often at the risk of their own health and wellbeing' considering the mental and physical stress they undergo. And this caregivers-at-home, more often not being taken for granted.

That's not only a problem for caregivers at home, but for the patients under their care too. To successfully help those patients, Pharma India will have to make sure that caregivers-at-home gets the support they need.

What can Pharma India do? Provide them support.

Cancer patients on chemotherapy have a lot of side effects. Often neither the patient nor the caregivers-at-home can distinguish whether the problem surfacing is because of the chemotherapy or is an extension of the disease state itself. That's where Pharma India can step in.

When patients wish to communicate with the doctor's caregivers-at-home tend to take the lead. Dr. Shailesh Vyas says that more than four in five caregivers-at-home spearhead and play an active role in their patients' conversations with doctors. While the patient is passive, caregivers at home are more involved in discussions about their patients' conditions or treatments most of the time. Pharma India cannot ignore the fact that caregivers frequently determine their patients' course of treatment. And patients do allow this to the caregivers at home. Crores of caregivers-at-home across our country are the primary decision-makers for their patients and it's crucial that pharma marketers engage, train, and help the caregivers for a superior patient experience. Today this tribe is without any formal training.

Today they may head for the internet. They may even have to piece information from many sources together. At a bare minimum, Pharma India can make these searches significantly easier for the overburdened caregivers-at home by streamlining and centralizing caregiver-specific information on their websites. But there's room for Pharma India to go a step further by creating caregivers-at-home-specific information hubs and developing dedicated caregiver training and educational programs. A patient-support group to help this noble tribe of caregivers at home will be a great service to the patient.

This is the human problem to resolve. This is H2H Marketing and Brand Management!

Another area where Pharma India can step in is medication adherence programs. The influential caregivers-at-home must be educated that poor adherence to appropriate medication therapy may result in complications, death, and increased health care costs. Medication adherence in patients with chronic conditions such as diabetes, hypertension, asthma, and depression is a significant problem requiring intervention as per the Capgemini study. ⁽¹⁾ The problem is that caregivers at home don't necessarily know about the issues of poor adherence to medication. Pharma India has an opportunity to not only help caregivers at home but also to maximize their investment in them which in turn could result in additional revenues for the organization.

The Capgemini report further says that even in chronic disease, patient adherence is less than 60%. ⁽¹⁾ I would like some Head of Marketing who is reading this blog, and with diabetes or a cardio, portfolio to calculate the revenue loss to his/her company because of poor patient adherence.

Many companies in Pharma India are already into some form of patient-centered activities. But I haven't come across any company directly serving the caregivers-at-home. Maybe I am not aware, but many caregivers-at-home too, like me, could be unaware. The crores of untrained but dedicated caregivers-at-home need support from Pharma India. Pharma India has an opportunity not only to help them but also to maximize their investment in them. Companies can expand awareness of the resources they offer and ensure that those resources and tools get to those who need them.

That's H2H Marketing.

Can IPA, OPPI, or IDMA take the lead?

Reference:

1. Capgemini Consulting (2017). Estimated Annual Pharmaceutical Revenue Loss Due to Medication Non-Adherence. Available on https://www.capgemini.com/wp-content/uploads/2017/07/Estimated_Annual_Pharmaceutical_Revenue_Loss_Due_to_Medication_Non-Adherence.pdf. Accessed on 27 December 2017