We present the findings within each theme from both the patients’ and providers’ perspectives to enable a comprehensive understanding of the processes involved in seeking and delivering care. We present the findings for the three private clinics first, and then for the three public health facilities.
Doctor-centred care process impacting communication
At both public and private health facilities, patients start their journey through the health facility by meeting the doctor. The number of consultations were limited, by use of tokens, at private health facilities, usually up to 50 during 6 h of OPD compared to an average of 75 patients (up to 150) in 4 h at public health facilities. All of the interactions that follow at the laboratory or pharmacy were centred around and informed by the interaction with the doctor.
“We will first go to the doctor, he will give the prescription for the tests, then we will come to the nurse and get the blood test done for sugar levels, and get the BP check -up done, if they say it is normal, we will go back to doctor and take the tablets which are in stock and come back”. (Patient 1 at private health facility)
This may be due, at least in part, to the expectation patients have of being seen and advised primarily by doctors, but also because of the prominent hierarchy that exists between doctors and other health professionals, with the former at the apex. There was a lack of specified and planned interactions with other members of the team, such as the nurse or lab technician.
“sometimes staff nurse will be there counselling and she may be involved, suppose…. they are having severe hypertension or hypertension at present or diabetes at present I will send them to the sister just to counsel them, if I am free I will be talking to the patient if I am not free or a little busy I will ask the sister and I will say please explain this patient what about his diet and role of the diet or exercise and all”. (Provider 6 at Private facility)
This placed the burden of examining, screening for risk factors or complications, treating, sharing information of lifestyle modification, and ensuring follow-up entirely on the doctor. Within the few minutes the doctor spends with the patients, it was not always possible to complete many of these tasks, such as screening for risk factors, complications, and support for lifestyle modifications. Patients especially in the public health facilities were dissatisfied with the time the doctor spent.
“they are not interested to hear they don’t listen, the doctor doesn’t have time...if we have much to say they say come to my hospital (doctors private practice)” (Patient 5 at public facility)
Notably, at both public and private facilities, the process of care was not any different for persons with chronic conditions, such as diabetes or hypertension, than persons with acute conditions.
Fragmented care processes impacted by a reality of scarce resources
In all three private facilities, a pharmacy was available at the same location, however, a laboratory was present in only 2 of the 3 facilities. Mostly, patients were able to have their blood tested and procure medicines in the same facility but when then this was not the case, patients found this quite challenging. Especially, as it involved finding a suitable laboratory and an additional visit to the laboratory or pharmacy.
“There is no lab here, that is the problem, we have to go 7 km away, we have to go in the morning and give the sample and again after breakfast we have to go after 2 hours, and by the time we get the report, it will be half a day, and again the next day to show that to doctor we have to spend half day, so by this we will be wasting our 2 days.” (Patient 16 at private health facility)
In the public facilities, laboratory and pharmacy were available at the same location, but these services were often unavailable due to a lack of supplies and medicines.
“I will go to [the town of] Mulbagal to get the medicines as they are not available and it is 10 km away from my place.” (Patient 11 at public health facility)
“Not only in our PHC, but like other PHCs, also District Hospital and Taluka Hospital, [the medicine] was not there…for more than 6 months.” (Provider 5 at Public facility)
“the fasting and the one after food (blood tests) are not being done here so they go for SNR govt hospital (District hospital) and there it will be done….they do there and they will get opinion from the physician…..what to be done what not to be done and we continue it here”- (Provider 3 at public facility)
PHC doctors perceived their role reduced to merely pursuing the treatment process started by the physician at the NCD cell. This is in line with the limited role and package of services attributed by the NPCDCC to the primary care level.
Decision-making for care- not evidence- based nor patient- centred
At the private health facilities, doctors made treatment decisions based only on blood glucose levels. Another, important consideration was the patient’s economic ability to afford medication. The decision to screen for complications and perform further investigations was also determined by their ability pay for it.
“I do a rough socio-economic assessment and prescribe what I think they can afford.” (Provider 6 at a Private facility)
“So, in the initial assessment we do all the parameters. If they can’t afford [more], only blood sugar will be done, but if they can afford [it], all the parameters will be done.” (Provider 2 at Private facility)
Doctors feel that patients should not be involved in decision-making on their treatment and feel that they do not have the knowledge to meaningfully participate.
“This must never be done [asking patients about preferences], you have to tell the patient and not allow them to tell you what to give or not. Not in a bad way that I am the doctor and you are the patient, not that attitude, but explaining nicely.” (Provider 6 at Private facility)
“awareness is a big challenge, “they (patients) don’t understand and in diabetes they become forgetful also and don’t remember the advice”- (Provider 1 at Private facility)”
Also, at the PHCs, doctors did not involve patients in treatment decision-making, perhaps because of a lack of time. Most patients did not expect them to do so.
“Whatever he writes I just take and come back.” (Patient 6 at public facility; referring to the prescription that the doctor gives at the end of consultation)
Doctors at private facilities found treatment guidelines and protocols difficult to apply. Two of them said that, though they were aware of international guidelines, such as those issued by the American Diabetes Association (ADA), they did not follow them completely and thought they were not practical. This may be due to a lack of information regarding risk factor status or complications, which is required in order to follow these treatment algorithms but not recorded at any of the facilities. However, the doctors seem to be guided by other social and contextual factors that, in their experience, influence compliance and regular follow-up.
“I start with metformin like ADA says to start with, but if not controlled I don’t increase as much as ADA says, but add a gliptin [class of antidiabetic drug], and nowadays I prefer the 4GPPs [newer class of antidiabetic drugs].” (Provider 6 at Private facility)
At the public health facilities, doctors also made treatment decisions based on the blood glucose levels, usually random blood glucose using a point of care device. The doctor stocks medications that are on the essential drug list and has a choice of usually only two (metformin and glibenclamide). None of the three doctors at the PHCs were aware of any treatment guidelines provided by the NPCDCS [28] that provide guidance on medication choice and dosage.
“No written guidelines or algorithms are provided to us.” (Provider 4 at Public facility)
Other than blood glucose levels, treatment decisions are guided by affordability in private facilities and mainly by the availability of medicine in the public facilities. However, neither public nor private facilities follow guidelines; they lack information to help guide decisions, even if there is some awareness of guidelines and attempts to use them by the private doctors.
Broken health information systems: A challenge to continuity of care
The private health facilities encourage the patient to retain a notebook containing the medication and last blood pressure or glucose recordings. However, no recording of patient details is maintained at any of the health facilities, placing the responsibility to bring this information for continuity of care completely on the patient.
“I usually ask them to bring a notebook with them and record in this each time.” (Provider 1 at private faciity)
The doctors do not have information available to identify high risk patients, schedule follow-up visits, and ensure regular care, resulting in patients dropping out of care.
“They told [me] the sugar levels are normal and to take the same tablets, so I did not go.” (Patient 17- not in regular care but previously seeking care at a private health facility)
At public health facilities, the use of a notebook or a book given by the NPCDCS seems to be common practice. Even though such a patient-retained medical record is a laudable attempt at maintaining continuity, patients do not consistently use it. The patients are unable to appreciate its role in maintaining continuity, and many feel that the last prescription or empty blister pack was enough for this purpose because it was only important for the doctor to know what medication was prescribed.
“The nurse and the doctor who gave me that book have changed so I don’t bring it anymore.” (Patient 14 at public health facility)
Even though the PHCs have to submit monthly reports to the NCD cell, only total numbers screened and attendance at OPD are monitored. The lack of patient information results in all patients being asked to come back after 1 month, leading to more visits than may be necessary, which is both inconvenient for patients and increases patient load at the PHC.
The lack of recorded clinical information, the limited time for consultation, and the reluctance to involve patients in management decisions impacts the ability to use evidence-based guidelines and affects the quality of care provided.
Work done by patients in “self- management” and managing care processes
Patients accessing care at public or private health facilities actively try to cope within this complex, fragmented health care delivery system. The CCM defines self-management as tasks that include taking medication, being aware of complications and danger signs, maintaining regular follow-up, and making sustained lifestyle changes. We found that patients have to do much more than this in the Indian context, including finding a health facility from which to seek care. Patients continuously try to make sense of their health condition, attempting to understand when their glucose levels or blood pressure is increased, why they got the condition, what food they need to eat, where to get tested, where to buy medication, and when to go back for a visit.
“I will come to know, I will feel tired, and I will not get complete sleep.” (Patient 1 at a public health facility, regarding revisiting the health facility)
“If I feel the BP has gone up, if I have a headache, I will increase to two tablets a day, one in the morning and one in the night.” (Patient18 at public health facility)
Most patients make lifestyle changes and are able to sustain them, especially in regarding their diet. The information they have comes from many sources other than the health facility, most commonly from others in the community.
“Yes, less salt… I don’t put salt in the dough for roti [bread], salad also less salt, some say it is bland, but we have got used to it now.” (Patient 5 at private facility)
“We will be seeing people with diabetes in the society around us, and know to some extent how the diabetes patients should follow the diet.” (Patient 3 at private facility)
We found that patients have to do much more than managing the disease condition, in the Indian context, including finding a health facility from which to seek care. Most of the patients had been to more than one provider, some up to five, since their condition was diagnosed. The health facilities they visited were a mix of public and private health facilities in Kolar and Bengaluru, the capital city of the state. When asked how they decide where to continue treatment, most expressed that the doctor speaking to them respectfully was an important consideration. Suggestions from family members and distance from home were other factors affecting choice of doctor.
“They give good treatment and treat patients nicely, the treatment they give, we are getting good results” – (Patient 6 at private facility)
In contrast, patients choose to attend a public health facility mainly because services, including medications, are available free of cost and they are close to where they live. However, if they had resources, they would prefer to seek care at private facilities because they perceive them to be better than public facilities.
Patients commonly expressed how common the disease was and how, if they continue to take their medicine, they would be “normal”. They seem to use sharing a condition with a large number of people as a mechanism to cope and make sense of living with a chronic condition.
“I said to myself that this disease [diabetes] has become very common in India, we should take treatment properly to be fine.” (Patient 2 at private health facility)
“We have to bring down our disease, it is in our hands.” (Patient 7 at a private health facility)
The fragmented delivery of services and the broken information system compel patients to do much more than just manage their disease, as it obviously has an impact on the entire process of care.